advocacy – Hearing Elmo

The Selfless Practice of Self-Care

Published on June 4, 2018June 4, 2018 by hearingelmo3 Comments

It’s strawberry season! My little city just had a strawberry festival, and although I was not able to attend (there was a torrential rain), my husband picked me up some strawberries as he knows my fondness for anything “berry”.

Lately I have been thinking about “self-care” a good bit. I recently made a choice to not do something on behalf of someone I care for and I knew (from their reaction and words) how much I disappointed them. With strawberries on hand (and no dried beans or walnuts as the illustration normally requires), I decided to re-do the illustration with some different elements. I had rice, almonds and now strawberries. Hey… you work with what you have, am I right?

I hate disappointing people. Especially people I really care about and enjoy being around. I have only recently earned a self-awarded “certificate of self-care advocacy”. My normal response to being asked to do something I cannot do, should not do, and will sacrifice my health/mental health to do was “sure! No problem!” and a default. It’s hard to practice self-care at times, because others misunderstand and may believe you are being selfish, self-pitying, or lack compassion for others. I have learned to “stick to my guns”, but it doesn’t mean I don’t recognize and feel another’s disappointment in me. The flip side? I am not disappointed in myself.

My Re-Make of an Old Illustration

So let’s say the grains of rice are all the little things we do each and every day. They are choices to spend 5-10 minutes doing “this or that”. They are relatively unimportant tasks that if left undone, the world does not implode.

The almonds are more important things. I’m going to call my “nuts” family <grin>, close friends, advocacy groups, work and professional life, and community service/faith practices.

The strawberry is me. This big, luscious (- hey… jus’ sayin’) berry includes my physical health, mental health, emotional well-being, and spiritual well-being.

In the jar on the left <points up>, I filled my day/life with all the inconsequential things first, then the “nuts” in my life, and finally me – a big, beautiful strawberry…

… that doesn’t fit.

The jar on the right has the berry going in first. The rice and nuts settle around it just fine. (Yes, I measured and each jar has equal amounts of rice and almonds). If you look carefully, not only did everything FIT, there is some left-over room at the top.

Mayhap poorly illustrated, the point is that if you do NOT put yourself first everything will NOT fit.

Folks with disability have a hard time with self-care. Let’s stop and discuss possible reasons:

They feel guilty already because they may require another’s assistance and time to do normal tasks.
They rarely have 50/50 friendships. They fear they will be labeled as “takers” and not “givers”.
They fear a lack of control over their lives. Instead, they sacrificially try to help others first, ultimately hurting themselves.
They want to be useful and have a life of purpose.
They believe to say they cannot do something admits defeat.
They work WAY to hard trying to live up to the accomplishments or abilities of someone else who shares their diagnosis but not their life. (No two people are alike).

One of the hardest lessons I’ve learned is that I cannot live a life with purpose and make a difference if I do not take care of myself FIRST. It’s not selfish. It’s selfLESS. If I do not take care of myself, I am useless and unable to do anything at all for anyone else. I have made the mistake of saying “yes” to something with too high a price tag, only to suffer for days, weeks, or months physically, mentally, emotionally, and spiritually. When I practice good “self-care”, I am actually able to do MORE for others.

Now you may be thinking that’s all fine and dandy, but if I am saying “no” to things in order to protect my energy levels, health, and mental health, aren’t people going to really stop seeing a person with disability who CAN have a life of purpose and instead see someone DISABLED?

Not if you handle turning down requests the right way.

You can’t babysit your niece this weekend because you know you need some extra rest? Ask if you can babysit with a 7-10 day notice so that you can rest up in ADVANCE and help with babysitting.

You (and others) were asked to volunteer for a community service opportunity that would mean an entire day of being in a big crowd? (With Meniere’s disease, I can only take so much jostling). Ask if you can donate snacks for the breaks. Ask if there is anything you can do behind the scenes.

Work is having a “walk a mile in her shoes” event. (Everyone wears heels and walks a designated route and distance to support rape, sexual assault, and domestic violence programs and survivors). Y’all? I can’t walk 3 feet in heels with a balance disorder, let alone toddle, stumble and do face-plants all the way around a track with my colleagues. This doesn’t mean I can’t: Invite others to participate, give extra credit to students who participate, volunteer to hand out bottles of water (and bandaids-snort), and cheer along the side-lines.

Let’s say you really like visiting with a person and care about them a great deal. However, what if they have baggage (in the form of spouses or intimate partners) that may accompany your “person” who is toxic to you and everyone you know? Offer to meet with the friend for a one-on-one lunch or visit. You set the safe boundaries and ultimately enjoy your time with them.

Work related requirements: I have learned that if a meeting or activity is required and yet will not be fully accessible to me (hearing, space to move safely, etc.) to request accommodations WITHOUT APOLOGY. However, then I work hard to be fully invested and participate with enthusiasm.

In closing, I wanted to share a final thought. This one I am still working on and currently fail to do it right more than I do it wrong.

Don’t apologize for practicing self-care.

I worry too much about what people think I suppose. I tend to TMI (too much information) after declining an invitation to participate in something and make excuses when none are necessary. I’m trying to learn not to say:

I’m sorry I can’t help with that. I know I’m letting you down.

and instead say,

I know myself well enough I cannot do that safely. I am trying to practice self-care. May I do “this (fill-in-the-blank)” instead?

Develop a self-care plan. Chart out (it helps to see it, I promise!) what you can do in a day and what you can do in a week. Stubbornly defend your right to say “no” to something when your chart is already full. Y’all? Don’t scratch out that necessary NAP to do a task for someone else instead. If your nap is needed to re-charge, make it a priority.

Take care of yourself! (A great article on what self-care IS and IS NOT – CLICK HERE).

L. Denise Portis, Ph.D.

One-Eyed, One Horn, Flying Purple People Eater

Published on November 10, 2016November 10, 2016 by hearingelmo2 Comments

Sheb Wooley released a song in 1958 called the “One-Eyed, One Horn, Flying Purple People Eater“. I know this not because I was there (ahem), but heard the song throughout my childhood. If you have never heard this “gem”, you are MISSING OUT. To help fill that void for you, click here for a captioned version: Enjoy

Now I mention this because this song has been going through my head for a solid week. I know! I do have better things to do! However, I’m in the car enough that I tend to fill the time with singing… or maybe BELTING out the OLDIES is a more truthful admission. For some reason, this song is just stuck in my noggin’. It is a song that frankly? It doesn’t make much sense. Maybe it did to Mr. Wooley. Something doesn’t have to make sense to get stuck in our head though. It doesn’t even have to be the truth. It doesn’t even have to be healthy.

Negative Broken Record

Sometimes unhealthy thoughts and labels stick with us because at some important developmental milestone, we heard these negative things enough we have come to believe them. These negative thoughts can turn into self-fulfilling prophecies. These negative, perpetually repeating thoughts can bring us down and keep us in a state of defeat. Experience tells me that a state of defeat = dissatisfied and unfulfilled life.

A get so aggravated when people (and sometimes counselors) say you should erect boundaries with people who tell you negative things that you take to heart. Easier said than done. What if they are family? What if it is someone you work with daily? Most of the time, if someone tells me something negative I try to:

Determine if there is any merit in what they are saying. If so, does it mean I need to change some behaviors?
Determine if I respect the source. Should I spend any time at all contemplating what they’ve said as constructive criticism, or is something I should immediately release as misdirected and poisonous barbs?
Determine the level of influence. Do I work with this person? Is this someone I must see either occasionally or frequently?

Sometimes the “stuck in my playback feature” of my brain are negative comments, labels, or criticisms from people I care about. I can set up a boundary (and have… mentioned below), but I cannot just shut the door and throw away the key (although there is a time for that too… read on!).

I’m no expert in rebuttal of mean insults, however I learned at a fairly young age that “fighting fire with fire” only burned everyone. Frankly, I can stand the smell of scorched material.

I learned that getting defensive often only made me look petty, childish, and well… DEFENSIVE. A defensive stance and demeanor is not attractive on me (perhaps on no one).

I have learned two responses that work for me:

What you have said has upset me. I need some time to regroup and then I would like to talk about what you just said (or called) me.
I don’t believe in labels and discussing things with mean-spirited people. I would love to continue this conversation in a more healthy way when you are ready to do so.

You-re Ugly. You-re Fat. You-re Disabled. You-re Embarassing.

It makes me so sad when I hear people say self-deprecating things, knowing they heard it somewhere else first. Those “stuck in our head” kind of hurtful descriptions are usually hurled from the mouth of someone who claims to love us. It doesn’t always have to be wounding comments either. In my Developmental Psychology course, I ask my students to write down 10 things they have heard from friends and family members about themselves that were hurtful “to date”. It takes most students 10 minutes to write down 10 things; or, about 60 seconds per recalled comment. Then I give them a new piece of paper and ask them to write down 10 things they have heard from friends and family members about themselves that were encouraging, uplifting, and positive. It takes a student three times as long. That’s right. At 30 minutes I call “time” and there are always some who have not been able to come up with a full ten items. What does this tell us? Are humans more prone to remember negative or positive?

Negative comments are like wounds. They may cause us to bleed and to fester. Maybe infection sets in as well and our wounds begin to affect other body parts. Negative comments leave scars. No amount of vitamin E, cocoa butter, or cell activator products will remove the scar. Sure! Both time and perhaps counseling and support can reduce the visibility of scars, but the scar remains.

Positive comments seep into the skin slowly. Yes, perhaps our ears are the conduit, but our hearts are what build up our self-esteem. Dr. Barbara Fredrickson (OCDE.US, 2016), explains that there is a 3:1 ratio of necessary positive to negative comments to equalize the impact. In other words, for every negative comment you hear and take to heart, it may take three positive comments to remove the potency and harmful effects of the negative comment.

Permanent Brick Walls

Sadly, there are times when you must love yourself enough to initiate self-care in building a permanent brick wall to toxic people. It isn’t easy. There may be a price tag. You may alienate others who are affected by your choice. You may become the target for people who insist that forgiveness AND reconciliation are mandatory. My friends? There are times that this is a small price to pay compared to the continued damage a toxic person may deliver.

If they are incapable of remorse and change, who will protect us? Though it may sound attractive at our low points, putting out a hit on the toxic person is not a good choice. If we do not permanently dis-allow them opportunities to harm us, who will? When I have had to do this, I do so with heavy heart. However, I also do so knowing my children are looking to me for an example. Cuz ya know what? They are going to have toxic people in their lives. When I disassociate with a poisonous soul, I do so knowing that younger adults learning to live with acquired disability or illnesses are watching me.

It Doesn’t Take a Gift of Words

I don’t know about you… but I want to be a part of the group that is telling another something positive, uplifting and encouraging, and genuine. I want to be a part of the THREE that helps to cancel out the negative things another has heard and believed. All day–each and every day–I look for opportunities to say positive, genuine things to others.

“You look great in that color!”

“Wow, look at how well you did on this exam!”

“You always have the greatest things to say during class discussions”

“Thank you for emailing me about your current crisis. You are so responsible in that and I want to help you”

To people I know who are differently-abled:

“Those running lights on your wheelchair are freaking AWESOME!”

“You have the best hearing of anyone I know” (to a student with vision loss)

“You’ve told me about your personal demons. I love how you bravely and courageously face life with a smile”

“I love how Milo (my service dog) loves you. He must sense what a caring person you are to seek you out each class period” (to a student with recent TBI who is still coming to terms with new challenges)

That’s All Fine and Dandy – But I Cannot FORGET

Yup. I can determine to be part of the solution (instigator of the positive in the 3:1 ratio), and still have STUCK negative comments playing over and over in my head. “♫ ♪ This is the song that never ends, yes it goes on and on my friend. Some people started singing it, not knowing what it was, and they’ll continue singing it forever just because… ♫ ♪ ”

So what’s a person to do?

Surround yourself with people who are positive contributors. You may not be able to pick your family and have tough choices to make about boundaries, but we can pick our friends. Make wise choices.
Learn self-talk. “With practice, you can learn to notice your own negative self-talk as it happens, and consciously choose to think about the situation in a more realistic and helpful way” (Martin, 2016, para. 5).
Be realistic about extremes and over-generalizing. I love these 7 “steps” to eliminating negative thinking. Check them out here: CLICK
Affirm yourself. CUTE VIDEO of a little girl saying all the right things in 50 seconds: CLICK. Perhaps talking to yourself in the mirror has fallen out of style (but should it have?). Regardless, we can learn to dispute that negative STUCK phrase in our heads. You gotta identify it first, then figure out where it came from, decide if it is true, decide how you want it to CHANGE, and then do #3 above. And hey… if preachin’ at yourself in the mirror helps? Go for it!

I leave you with the challenge to be someone’s 3. Be the positive, uplifting and affirming influence for another individual. Make it genuine (no lying… who does that help? I never say something positive I don’t mean/believe) It may take some practice. You have to learn to be watchful and observant. May God grant me the opportunity to be the 3 for someone! That these comments may re-play in a person’s head with the frequency of one-eyed, one horn, flying purple, people-eaters? Well, color ME PROUD.

Denise Portis

Fredrickson, B. (2016). The magic ration of positive and negative moments. Retrieved November 8, 2016, from https://www.ocde.us/PBIS/Documents/Articles/Positive+$!26+Negative+Ratio.pdf

Martin, B. (2016). Challenging Negative Self-Talk. Psych Central. Retrieved on November 10, 2016, from http://psychcentral.com/lib/challenging-negative-self-talk/

Boundaries & Brick Walls

Published on September 5, 2016 by hearingelmo4 Comments

brick

I’ve shared on “Hearing Elmo” before how important I think boundaries are to people with invisible illness, disability or chronic conditions. I believe we are already vulnerable. Not a WEAK sort of vulnerability, for we are actually very resilient in comparison to people who do not struggle with similar challenges. Dunn, Uswatte, and Elliott (2009) report that people with acquired conditions and challenges are often more resilient, happy, and have a positive sense of well-being. Yet, because we struggle to be all that we can be with new limitations, we can be vulnerable to others through criticism, disbelief, and lack of support. I believe that as people learn to cope and adjust to a “new normal”, boundaries–and sometimes BRICK WALLS–are imperative.

Boundaries

One of my favorite books that I often mention, is “Boundaries” by two of my favorite psychologists/writers, Cloud and Townsend. I highly recommend the book if you are seeking to establish healthy boundaries.

boundaries

I could go on and on about how MEAN PEOPLE SUCK, but this is more than that. We have all experienced interacting with people who are toxic, negative, and critical. These interactions inhibit our growth and our ability to cope effectively and successfully with challenges–that to us are not CHOICES, rather realities of living in our bodies. Boundaries can, and should be, set for these people. A boundary limits our interaction with someone that we have discovered hinders our growth or influence. Boundaries are not permanent. People can re-establish a good relationship. I always cringe when I hear people say, “Once you’ve lost my trust, you’ve lost it forever“.

I am not who I was. I hope that my life reflects a “work in progress”. I want to be a person who continues to grow each year that I live. I believe I can set a boundary for a critical and negative person, and my faith can be restored in this person at a later date. Life changes people, folks! The boundary keeps me at a safe distance, however, for whatever period of time is needed by that person to change or grow themselves.

Yes.

It hurts when you have to set up a boundary with a family member or someone who was once a close friend. Even these boundaries are necessary at times. Self-care is not only important, it is necessary. If we do not do what we must (by setting up a boundary for an unsafe person), we cannot thrive or make a difference in the life of another. Boundaries limit what we offer to these people. You may choose to not share specific things about yourself with them. You may limit how often you interact. These boundaries protect you and allow you to continue to live victoriously. They allow you to be the champion… the WARRIOR, that you are!

However, there are times when boundaries become more than safe zones for us. Boundaries can turn into permanent and impenetrable fixtures to completely cut us off from unsafe people. The boundaries become brick walls.

Brick Walls

When do you know that a boundary needs to be replaced with a brick wall? I believe…

… you will know.

The person has habitually harmed you. You have provided an avenue for reconciliation and they have repeatedly taken advantage and continue to injure you. When this happens, it’s time for a brick wall, my friend! When and if you choose to permanently block someone from your life, it is important to remember:

You are not responsible for their behavior.
You are not selfish, nor stubborn.
Your applied masonry skills mean you can continue making a difference in the life of others.

How do you build a brick wall and permanently dismantle a relationship? I have had to do this. It wasn’t easy. It hurts when it is someone who once mattered a great deal. However, self-preservation may mean you need to build that wall. Here are some things that worked for me:

Block them from all social media outlets.
Block their phone number.
Block their email address.
If you can, eliminate all face-to-face interactions.
Don’t feel guilty. If you do, you are weakening that brick wall. You were not the toxin, they were.
Avoid other’s efforts of reuniting you to this person. Well-intentioned people often do not know the whole story.
If you must grieve the loss of this person, allow yourself to do so.

Because this is something I once did, I feel like I should give a warning as well. Don’t build walls because you are hurt and hunker down into protective mode. This is self-imposed isolation, not deliberate wall-building to keep out those who are toxic to you.

A perk I’ve discovered of brick walls? It can force a change of direction. You never know “who” or “what” awaits you as you step in the opposite direction.

Denise Portis

Dunn, D., Uswatte, G., and Elliott, T. (2009). Happiness, resilience, and positive growth following physical disability: Issues for understanding, research, and therapeutic intervention. Retrieved September 5, 2016, from https://www.researchgate.net/profile/Timothy_Elliott/publication/232514358_Happiness_resilience_and_positive_growth_following_physical_disability_Issues_for_understanding_research_and_therapeutic_intervention/links/09e4150a3327348871000000.pdf

Let Sleeping Dogs Lie

Published on August 5, 2016August 5, 2016 by hearingelmo6 Comments

In my opinion, one of the more frustrating truths about positive advocacy is the need for repetition. I understand that because my challenges and disabilities are a part of my life, adapting, coping, and sometimes “making do” are a natural part of each and every day. I also understand that because many people with whom I interact do NOT live with hearing loss and balance issues, what is second nature for ME never crosses their minds. The trick… and something I have been struggling with, is how often do I have to ask for accommodations? How often do I repeat the same ol’ request so that I can simply interact with others equally?

The above photo is of my current service dog, Milo, from Fidos For Freedom, Inc. Milo is a young Sheprador (German Shepherd/Laborador Retriever mix) who rarely sleeps. When he does, he sure is cute. ‘Course I’m a tad bit prejudiced being Milo’s partner. The phrase, however, “Let Sleeping Dogs Lie” originates from a proverb that means to leave something alone if it is going to cause trouble, or dredge up old arguments.

However, when we strive to promote positive advocacy and request accommodations (that were asked for before and are still not a habit for those providing the service, workshop, or seminar), when do we just “leave it alone”? One of my longtime requests is that speakers use the microphone, and repeat questions asked from the audience INTO THE MICROPHONE. Yet, time after time speakers say, “Oh I don’t think I am going to use the mic. My voice carries…” or, “I’m just going to put the microphone over here… you can all hear me, correct?” I’ve even had speakers have everyone in the audience introduce themselves and give some information about their background WITHOUT A MICROPHONE in sight!

I wave like a crazy person and “shake my head no” when speakers say this, and yet time after time I sit in meetings like this with no one using the microphone. At the end of conferences I fill out surveys about my conference experience and have tried to relay how important the microphone is to me. I’m to the point that I may stand up and create a mini-scene, asking them to use the microphone. As a person with hearing loss, in a large, cavernous room, I go from hearing 95% with microphone in use, to about 20% when it is not. Any idea how hard it is to get anything out of a meeting if you are only getting 20%?

I don’t even go the extra mile and request CART. It’s expensive. In spite of people with normal hearing asking for a copy of the transcript as well and my knowing it helps more than just ME, I don’t make formal requests for CART as a simpler solution WILL actually meet my needs. Entering a new school year with loads of meetings on my calendar already, I am to the point of “letting sleeping dogs lie”.

The only problem is, it isn’t in my nature to roll over and give up. So wake up, DOG.

Denise Portis

Use Your Words

Published on April 5, 2016April 6, 2016 by hearingelmo5 Comments

Not too long ago, I stood in the kitchen with a piece of my kitchen cookware, and dramatically wiggled the (seemingly constant) loose handle.

“Hey, honey,” addressing my husband, “hand me the thingie-majig out of the… (I gestured wildly towards the drawer)… the… the… THINGIE!”

My husband turned to face me and raised his left eyebrow. It was only the left one. You know… the one he raises when I’ve said something truly ridiculous and he’s trying to make a point?

… with an eyebrow? Yeah. That one.

I continued to gesture holding the slightly, heavy pan and sputtered and fumed, not daring to repeat my request, only adding a bit of a head flick towards the… the… THINGIE.

At this point my husband’s raised eyebrow lowered. Instead both eyes grew wide with alarm. Both eyes. You know… the ones he widens in horror when he realizes I truly expect him to read my mind and decipher both thingie-majig and thingie?

“Denise.” (When he pauses like that not only do I know I’m in for a mini-lecture, but it also means it may be deserved).

“You canNOT expect me to actually know what you mean. We’ve been married a long time, but I know thingie-majig, thingie, whatcha-ma-callit, and doo-hickey are interchangeable, obscure references to whatever happens to be going through your brain at the time!”

Do you know I tried to argue with him?

“Terry.” (Cuz, what’s good for the goose is good for the gander).

“I’m holding a pan. I’m jiggling the loose handle. I need to use this pan. The handle is loose. I need a screwdriver. The “thingie-majig” is a screwdriver, of COURSE” (I sighed super loud for a little dramatic effect and continued). “I gestured towards the junk drawer with my eyes, head, and elbow. The drawer is the “thingie”. Now who wouldn’t KNOW THAT?”

His eyes lost their incredulous look. It was like watching a slideshow of emotions flick over his face.

First anger. (“Is she SERIOUS?”)

Next came a sad effort at stifling his laughter.

Then that lightbulb look. I love this look. It’s a slow-simmer realization that darn it. “Darn it, she’s right! That kinda made SENSE!”

He scratched his head and bent to collect the screwdriver from the bottom junk drawer. “It sucks that what you said made sense”.

I demurely accepted the screwdriver and sweetly…

Kept.

My.

Mouth.

Shut.

… because it didn’t make sense. I didn’t use words! Well, I did… but they weren’t real words. How can I call that communicating effectively?

When We Don’t Use Our Words

When you’ve lived with a chronic illness or disability long enough, the vocabulary associated with it becomes second nature to you. However, it doesn’t become second nature to others. You know all the medical terms and acronyms associated with your “new normal”. You shorten things and abbreviate information with people who really do not completely understand what you are trying to convey.

So… use your words.

Use specifics.

Don’t say, “I can’t hear well”. Instead be specific and offer an alternative that may help.

“I can’t hear well in this cavernous room with so much background noise. Can we step out into the hallway to finish this conversation?”

2. Don’t leave out details that actually assist in expressing your need.

Don’t say, “Will you watch the dogs for me while I talk to mom?” Instead provide some more detail so that your request isn’t unreasonable.

“The dogs are wound up and my mom is trying to FaceTime me. Can you take them outside while I talk to her for a few minutes? I will be able to concentrate and hear her better.”

Don’t say, “Oh my gosh I need to leave right now!” Instead provide the details for your hasty departure so that whomever is accompanying you can make polite excuses and follow you in a more polite way.

“Oh my gosh. The ceiling fans in here are low and are moving in the opposite direction of my inner ‘SPIN’. I need to step out right away”.

3. Avoid acronyms unless they are truly universal.

A.S.A.P. – – – Yeah. We all know what this means.

BPPV – – – To most with a balance disorder or Meniere’s disease, we understand this to stand for benign paroxysmal positional vertigo. Few others will know what this is. I have even discovered that within disability groups (types), members will often use acronyms that they think are universal to “us” and they are not. For example in a Meniere’s support group I belong to, the members constantly refer to Meniere’s disease as MD. As a volunteer and participant of a service dog organization that includes a number of mobility challenges, MD stands for Muscular Dystrophy for both myself and many others.

I have been surprised how understood and universal the acronym MS is. Many, many people seem to understand it stands for Multiple Sclerosis. Why is that I wonder? (I’m asking for real responses and not rhetorically!)

4. Don’t use cues unless you have practiced them and both you and your “helper” understand the cue.

If someone has facial hair or talks behind their hand, I’m likely not comfortable stepping into their personal space to hear them better. I will turn to my husband and touch the corner of my mouth. This means, “What’d he say? Repeat for me please?” We’ve used this FOREVER and it works without any hitches for us now.

I have trouble in places that have huge, open areas, or extremely, high ceilings. I may “look” fine. But if I pick up the vest handle on Milo’s equipment and quietly ask for my husband’s arm, he knows I’m about to do a face plant. If my husband isn’t around, I take Milo’s vest handle and head for the nearest wall so that I may continue with whatever I was doing safely, or talking to whomever I was trying to talk to before my “Woah!” I have never had someone argue with me about moving towards a wall. (I’m pretty sure people would rather move than pick me up off the floor).

5. Complete your thought. Use real words.

Just because you know what you are talking about, doesn’t mean you can voice a sentence fragment.

“Put it over…”

Put it over where? If the other person wasn’t watching, they do not know where you mean for them to put it.

Recently I got up on a step stool (never a good idea) to dust the ceiling fan blades in the dining room. The fan was OFF, so “color me SURPRISED” when I was hit with a sudden bout of vertigo and actually felt my vision tunnel as I struggled to stay conscious.

“Please! Right now!”, I screeched.

Manners didn’t matter. Specifics about the timeframe were irrelevant. I fell. My husband did hear the fall. Well… he HEARD the screech too, but he simply didn’t know what it meant. It was vague. It could have been meant for the dog who just stole my sock for the fourth time and I was demanding it back. (Hey. It’s happened).

He was horrified he didn’t interpret my call for help for him to actually get his butt there immediately. I hit the carpet and the dogs scattered safely out of the way. Since I didn’t injure anything (dogs included) I could laugh as soon as I made it vertical again. “Well geesh. It’s not like I called your name or explained why I needed you! I should have said, ‘Terry! Come quick!’, right?”

As fond as I am of “thingie-majig”, “thingie”, “doo-hickey”, and “whatcha-ma-callit”, they aren’t words. They stand for whatever word is missing from our immediate working vocabulary. They are stand-ins, and we simply cannot expect someone to make sense of them. When it comes to our challenges and self-advocacy, it makes sense to —

Make Sense.

Use your words.

Be specific.

Use necessary details.

One final word of advice though. Sometimes we work SO hard to be good communicators, we may offer a little too much information. If I throw the acronym at ya, of T.M.I., — does that make sense to you?

Too Much Information. We can blow people away with unnecessary details and specifics.

Several weeks ago I ran into one of my students in the hallway and we were headed in the same direction. He opened the door to the stairwell and I leaned over to hit the elevator call button. He said, “Oh here, let me carry that” and reached for my bag assuming I would be able to take the stairs if someone carried my bag.

I said, “Oh no. I can’t take the stairs. Even though I have Milo it will take me ten minutes to make it up one flight of stairs. I’ll be late for class. I just can’t traverse the stairs safely at top speed. I need to wait for the elevator. I don’t always wobble, or have bad balance days, but I never climb or descend stairs safely”. By the time I finished with my over-zealous answer, he was practically cross-eyed.

“TMI?” I sheepishly asked.

“A little… but we’re cool!” he cheerfully responded. He ended up taking the elevator with Milo and I because we were headed to the same class and were discussing something he was passionate about – projective tests (ugh. Hate them!).

So just be careful about being specific and detailed, without killing someone with unnecessary information.

Denise Portis

Apocalypse

Published on December 21, 2015 by hearingelmo4 Comments

My husband teases me about my addiction to apocalyptic movies. I’ve seen so many, and new ones come out each year! My husband assumes that the reason I love them is that I do have a pessimist’s soul. I’ve tried hard to change this and I’m certainly more optimistic at “almost 50” than I was at “almost 30”. However, that “end-of-the-world” vibe is not why I love apocalyptic movies. I love them because normal people rise to the challenge and become real heroes. One I recently saw was “San Andreas Fault”. Even though it was a good movie, “The Rock” (the leading actor) is not a “normal person”, nor did he play a normal hero. (At least his acting has improved over the years…) My favorite “end-of-the-world” movies are those in which folks with normal jobs “rise to the occasion” and discover who they really are in the midst of turmoil, tragedy, and overwhelming odds.

Coincidence, or Logical Comparison?

Each semester, one of the extra credit options I offer to my students is called, “disABILITY for a Day“, or d4D. I co-advise S.O.D.A. (Students Out to Destroy Assumptions), a student club focused to raise awareness and advocate for disability populations. In the extra credit opportunity, the students must “take on” one of a list of pre-selected disABILITIES. We limit what they can choose, so that students are not taking on a disABILITY that may perpetuate a stigma, such as a mental health disorder. The choices are hearing loss, vision loss, mobility (ambulatory) challenges, and fine motor skills. Students are provided with ear plugs, or an eye mask, encouraged to borrow crutches, walkers, wheelchairs, or they can tape one or both hands into a sock to limit their fine motor skills. We ask that the students take precautions… no driving, or trying to work off campus; if vision loss… secure a sighted guide for the day, etc. Students must:

Complete a class rotation with their disABILITY
Answer 10 essay questions and read an article about living with disABILITY
Write a reflective essay on their experience (or a video testimonial).

I was quite surprised that five students from four different classes used the same phrases in their reflection assignment. To my knowledge, these students do not know each other. Here are the similar wording or phrases used in response to the question, “What was the most difficult part of being disABLED for the day?”:

“felt alone”, “if this were for real it would be like the end of the world”
“I became invisible, no one even looked at me”
“It was like the apocalypse happened. It was surreal, walking around in a world that completely ignored your existence. I felt like I had the plague”.
“It’s like a bomb went off and I was the last person standing. I have never felt so alone”
“Even my professors ignored me. I felt so alienated. It felt like the end of the world or something.”

When I see similar phrases showing up, I take notice. Is it just a new way young adults are explaining isolation, discrimination, and stigma? Interestingly, in essays this year, many of the students reflections included seeing a person they knew with disABILITIES with “new eyes”. Many were convicted to do a better job reaching out and including those who are differently-abled. One student shared, “I go to class with a girl who has fine motor [skill] challenges. I chose to tape up my hands for my disABILITY. She was so excited to see what I was doing and gave me advice during class [about] note-taking and doing a team activity. She always has a smile and doesn’t try to hide her issues at all. I admire her so much. If I ever develop disabilities, I want to be like her”.

I’m so glad I grade essays at home. I read similar accounts from other students… a new awareness about what life is like for those living with what was their chosen disABILITY — only 24/7. I can’t tell you the number of times I cried at my desk. Not happy tears, and not sad tears. It was more of a WHEW tears.

WHEW. They get it.

I’ve never met a person with special challenges who WANTED those challenges. One of my students is legally blind. I was talking to him last year, and we got to talkin’ about acquired disABILITY. He didn’t lose his sight until his 20’s, which is when I began to lose my hearing. We discussed how we respond/think when people say how much they admire us now. He said, “Geesh. At no point did I say, “SIGN ME UP for being blind”. I didn’t ASK for this. You accept, adapt, and go on”. Isn’t that a terrific, healthy way to respond to challenges?

I (proudly) serve on my county’s Commission on Disability Issues and immerse myself in various local, state, and federal advocacy groups. Do you know that I am surrounded by heroes? Normal people with normal lives, forced to accept and adapt to significant issues. It may not seem like the apocalypse occurred – or that the end of the world is near. But… I can tell you that it can be hard. This doesn’t mean folks who are differently-abled or face significant daily challenges need Academy awards, fan clubs, or media coverage. We don’t want/need to see our “name in lights”, or for people to tell us how wonderful we are. Simply:

Include us

Befriend us

Hug us

Hire us

Believe in us

Advocate for us

Advocate? That’s right! The most important advocacy force comes from self-advocacy. However, peer advocacy, system advocacy, and legal advocacy are all highly effective forms of advocacy.

A new year is right around the corner. May I challenge you to try something in 2016? Advocate on behalf of another. Thomas and Bracken (1999) argue that peer advocacy is one of the strongest types of advocacy. You may find opportunities at work, church, or standing in line at the grocery store (check out video). You may be able to advocate at a local coffee shop (see video), or be able to participate in hiring panels. Just make sure it is advocacy that is WANTED. Be careful to avoid embarrassing someone, or advocating in a negative way. If you have the opportunity to advocate on behalf of another, I’d love to hear from you!

Thomas, P. F., & Bracken, P. (1999). The value of advocacy: putting ethics into practice. The Psychiatrist, 23(6), 327-329.

Denise Portis

Polygamy and Practice

Published on July 13, 2015July 13, 2015 by hearingelmo8 Comments

Do you know how many times polygamy has cropped up in my conversations? It’s super easy for me to hazard a guess because I have NEVER had a conversation about polygamy. I don’t watch “Sister Wives”, and know very few Mormons (and those I do – do not practice polygamy). So why… WHY would I bring the word up in a chance encounter? *shaking my head at myself*

I’m a creature of habit. I go to the same stores and the same restaurants. I’m super scheduled and my electronic calendar is near and dear to my heart. I’m color-coded. I’m organized.

Therefore, it’s no surprise that I tend to run into the same people at the places I frequent. I have shopped at the same grocery store for almost four years. You tend to run into some of the same people when you frequent a store. When you go everyplace with a service dog, it makes you rather unforgettable, especially with children. It’s no surprise that I see some of the same children in stores who have been curious about and thrilled with Chloe as I shop.

It shouldn’t have surprised me that a little boy I have seen a half a dozen times or more stopped me to ask about my dog. My new partner is Milo, a black shepherd/lab whose appearance is completely different than that of Chloe. Here is a recent photo of both Chloe (retired) and Milo (current). The picture isn’t that great which reminds me I need to work on getting some more “3 musketeers” shots!

This little boy that I see occasionally (whose name I DO NOT know – which embarrasses me as he knows my service dog’s name), looked at me with big eyes and said, “Where is Chloe and WHO IS THAT?” (Ya gotta love kids)

I replied, “Oh, this is my new service dog, Milo. Chloe is retired now and is at home sleeping on the couch”.

He looked very solemn and said, “So she still lives with you?”

“Oh yes“, I said. “She will always live with me. It’s just that Milo is my new partner!”

He was quiet for a second or two and said, “So it’s like you are divorced and Milo is your new service dog?”

I was so astonished by the seemingly change in topic I stuttered out, “Well… ummm…. no, not at all. Chloe and I aren’t divorced. I guess it’s more like polygamy and both dogs live with me now!”

The little guy look TOTALLY CONFUSED, and I glanced up to see the HORRIFIED LOOK on his mother’s face. Ever want to just slap your hand over your mouth? I knew as soon as I said it that it was 1) totally inappropriate, 2) would take the mother all day to explain to her son, and 3) completely “off the wall”.

I made a mess of trying to back peddle (for people with balance disorders can do precious little BACKWARDS), and hurriedly made my way down the next aisle.

I stood in the international food section fussin’ at myself and nearly in tears for using such a poor analogy around a 6-year-old. I determined then and there I needed to PrAcTiCe PrAcTiCe PRACTICE what to say in response to “where’s Chloe and who is THIS?”

Part of Good Advocacy is Practiced Responses

Being a good advocate and representative of “whatever ails ya” means you have good responses when someone asks questions. I have learned the HARD WAY, that these responses need to be rehearsed. When you are taken by surprise by either well-meaning, curious people or rude, snarky trouble-makers, you want to have a measured, helpful reply so that you advocate in a positive and helpful manner. I have found that if I don’t have a “canned response”, I tend to match the tone and demeanor of the person asking. This means that sometimes I am pleasant and in “teacher mode”, with great responses that educate and advocate on behalf of the disability community. However, other times I’m waving my cane in a curmudgeon’s face and informing them in no-uncertain terms how horrible they are.

At Fidos For Freedom, Inc., (where I trained for now – TWO – service dogs), we practice how to respond when encountering access issues. If you have a service dog, it is not a matter of IF you have access issues, rather WHEN you have access issues. It is easy to get flustered. It is easy to get mad. It is easy to say the wrong thing. Practice makes it much easier to respond with something that will actually help you and others like yourself.

Doesn’t it Suck that Many of the Rude Ones are “Kin”?

What is even harder is when the person acting incredulous and skeptical is someone you know well or are even family. I’m lucky that I have a very supportive spouse and adult children. Even so… it is hard to love someone with a chronic condition. Once in awhile, my husband (or kids) do not filter what they are saying, because they, too, are sick and tired of Meniere’s disease. I’m 100% certain my husband has rehearsed responses to commiserate appropriately so that he doesn’t spend the night on the couch.

(Holding an ice pack on my cheek, or head), “I’m so tired of falling and staggering around! What I wouldn’t give for just one day of no vertigo!”

“It must suck, honey!” is the rehearsed response so that “Yeah, I’m getting tired of taking off work to take you to the E.R.” doesn’t slip out.

It can really hurt when someone who knows you better than others “opens their mouth and inserts foot”. I recommend that even support people practice and learn how to deliver sympathy and encouragement.

You Will Still Blow It

Even if you practice measured, helpful responses to personal questions, you are still going to blow it from time to time. A couple of Sundays ago I was ticked off at myself for not responding kindly to someone and was thinking, “Denise! You’ve had this diagnosis for 2 decades! Exactly WHEN is it gonna become HABIT?”

I sit during the worship service. It isn’t because I cannot stand. Folks are surprised when they learn that at work, I stay standing for very long periods of time. I actually MOVE very easily and with very little wobble. It’s standing still that is the problem. My world turns… counter-clockwise when I’m standing still. I love my church. They are very supportive of people who are differently-abled. We have a loop system in the auditorium for people with hearing loss. We have fully accessible bathrooms and classrooms. We have an elevator and a lift for people with mobility issues. In spite of this, I’m forced to sit during the worship service. My church puts the words to the songs on the wall using a projector. We have a beautiful stage and lights as well. The song lyrics are in a multi-media slide show with patterns, colors, movement and lights. Everything is color-coordinated and changes song to song. The freaky OCD person in me is in awe every Sunday. It’s gorgeous! But… I can’t stand. If I do, I’m fighting consciousness. It isn’t a problem, for I don’t mind sitting. I’m comfortable and SAFE. I learned that not everyone understands why I’m sitting, however.

An elderly person came up to me at the beginning of the service and asked me how to access the hearing loop in the auditorium. I removed my cochlear implant and hearing aid and demonstrated how to switch to t-coil. I get this question about once a month and I’m always glad to educate. I love the hearing loop and it has dramatically transformed church for me. I love answering questions to help others access this wonderful technology. So wasn’t I surprised by the encounter, but totally floored by the follow-up question:

“So why are you seated during the music? I’m way older than you and even I can stand!”

I don’t know if it was the environment, the timing, or the unexpectedness of the question, but can I tell you … I really took it wrong? I could FEEL the tension creep up my spine and I was mentally counting to ten and trying to diffuse the explosion about to spew out of my mouth. THIS ONE I hadn’t practiced for. I hadn’t run any scenarios through my head and out through my heart filter to answer a question like this appropriately. So I didn’t.

“Wow. That was really, really mean. We’re done,” I said. The person looked startled, then uncomfortable and walked away. I think the last action was because I’m certain my look was murderous. I mean… I was MAD. (I later apologized).

Folks are gonna take you by surprise once in awhile. You will hear an insensitive comment from someone you weren’t expecting it from and it will just shock you into silence (if you are lucky) or cause you to say something you regret. It is best to be prepared.

Ummm… WHY SHOULD I?

Maybe you are thinking that if people are going to be insensitive and inconsiderate, that “why should I temper what I say in response?”

Since we are on the subject… here are some “canned responses”:

1. You don’t want to sink to their level.

2. You need to be the mature one.

3. Kill ’em with kindness.

4. In the end, you advocate for all of us.

5. Honey attracts more bees than vinegar.

Well.

I happen to love vinegar. I mean… don’t get me started on pickles. There are few things I love more. Let’s be honest though… from someone who is differently-abled to someone who may also live with acquired disability, chronic illness, or invisible issues, “WHY should we be careful in our response?”

(sigh)

Because it’s the RIGHT thing to do. Sucks, don’t it? I can tell you from experience though that it is much better to answer correctly and watch someone else squirm, than to have to apologize for “going off” on someone. Go practice, my friends! You’ll be glad you did!

Denise Portis

The Two Sides of Me

Published on May 23, 2015May 23, 2015 by hearingelmo6 Comments

I work as an adjunct professor at a local community college. This year I was thrilled to participate on the “Year of Social Justice” committee and to head up one of the major activities for the year – “disABILITY for a Day”. The students were given 5 disabilities to choose from, and were to experience a day of class rotation with the chosen disability. We limited the options because we did not want students (for example) choosing a mental illness and inadvertently feeding the stigma of various diagnosis. The students were to then answer 10 response questions and write an essay about the experience; or, create a video segment on their experience. If a student had a disability or invisible illness, they could do the activity “as their norm” or choose something different.

I received a number of finished products from some of my own students, some of whom I had no idea had a disability or invisible illness, and a few that I did. With permission, I am sharing part of that response (and leaving out names and identifiable descriptions).

An Invisible Influence

While I consider myself a person with invisible disabilities (profound hearing loss/hearing again bionically, and Meniere’s disease), I have worked very hard to make the invisible – VISIBLE. I learned in my late 20’s, that it served in my favor for people to recognize that I did not hear normally nor move normally. I do this by “BLINGing up” my cochlear implant, using a brightly-colored cane, and going about my daily life with a service dog by my side.

Although I have “been out of the closet” for years, there are more subtle things that I do not even realize are an influence for others who are struggling. I’m open about my challenges and actually have to work hard at not using too many personal illustrations throughout my lectures. (It’s one thing to educate your students about the disability community, and another to overwhelm them with details).

When I stumble, I usually say, “Woah!” and then grin super big and ask “would you like to see the rest of the dance?” I giggle at myself. Genuine, embarrassing/snorting giggles. If I turn too quickly towards the white board and slam into it, cheek first, I would have a spiffy comeback sometimes such as “ouch… up close and personal”. At times I would simply say, “Crap. It’s gonna be one of those days”. My students knew when I was having a particularly bad day because I would sit during most of the class, or simply announce that I was going to limit motion today (so please come to ME-smile).

One day in class, I reached to pick up a paper clip that I did NOT want Chloe to retrieve and fell on my face to the floor. Several students were there in seconds lending me a hand to resume my vertical stance. After hearing a couple of times, “Geez, professor. Ask for help”, I learned that I could ask for assistance when my service dog could not do so safely, and no one minded at all! I work hard at being transparent. I simply didn’t realize how well students with disabilities could see right through some of the “stuff” I used to advocate in a positive way.

I had a student this semester with visible disabilities, hidden and covered up to make them as invisible as possible. The student sat on the front row and wore a hoodie the first couple of weeks of class. It hid her face and her torso. I saw a transformation in this student in only four months. It wasn’t until the “disABILITY for a Day” assignments were turned in that I understood the why behind the change.

By the end of the semester, the hoodie was gone, she sported sparkly jewelry that actually drew attention to some of her challenges. She smiled (and golly did she have the most beautiful smile). She talked to everyone in her vicinity in the classroom. I saw students come up and hug her at the end of the semester and exchange phone numbers. The following is part of what she shared:

The Two Sides of Me

I always tried to hide my disability. In public I would cover up as much of me as possible. My face could be seen and I’d smile when someone looked at me. I would never allow them to look to long. In reality, I was broken, scared and even scarred. I have a professor who embraces all that she is, disabilities and all. I’ve seen her put other people’s unease at rest. She cracks up at herself. When she is having a bad day, she says so but continues to do her thing and teach. She never makes us feel sorry for her on her bad days. I’m not sure how she does it because one thing I hate is pity. Maybe it is because she is real when she is having a good day or bad day. I’ve heard her use the words “differently-abled”. She says she borrows it from a lady she knows with incredible courage and strength who lives with significant challenges. I don’t know why I’m 19 and only now figuring out that I’m differently-abled and not disabled. I have now learned to tell my family or close friends that I’m in pain or having a bad day. I don’t let it drag me down though. I have really good days, too. I’ve even learned how to put on make-up with one hand. Yay, me! There are two sides of me, and I like both sides.

I Get it Wrong – So Will You

I don’t share any of this to “toot my own horn”. As a matter of fact, I’ve made so many mistakes. For example, I had a student ask me this last semester, “Are you OK, today?” “Sure,” I replied with false sincerity. “Bull****”, they replied.

Busted.

I share this post today for one reason only. You often aren’t aware of your own influence.

Do you have a tough life? Be genuine, but live as if you are being watched. Be real, be transparent, but remember that someone somewhere is taking notes.

“Denise, you have no freaking idea what it is like. You have plenty of support. You have a job. You have friends”.

Yes. I hear from disgruntled readers from time to time that I cannot understand what it is like to experience the hardships they face. They are right. Their challenges are not my own. I know that I do NOT always have good support and feel alone. I have a job, but it is really hard to go to work some days. I have friends, but only a few that I could actually say, “please help me”. I don’t want anyone to ever think that I do it right all the time. If I was perfectly at ease with who I am and comfortable in my own skin, I wouldn’t be seeing a counselor twice a month. I have major depressive disorder and it is very closely linked with my disabilities. I do not want anyone to think I do not struggle – for I do. My motto is “I have disabilities; my disabilities do not have me”.

Live your life – that’s right, the one that is often TOUGH – as if someone was watching.

Someone is.

Denise Portis

TONS of Demerits = Life Turning Point

Published on July 7, 2014July 7, 2014 by hearingelmo3 Comments

I went to a Christian University right out of high school. I lived in a small rural farming community with no Christian colleges nearby so I thought that I may as well go to the one my parents attended … 5 states away. What I didn’t realize, is that little had changed in the 25 years since my parents went there. Rules, regulations, and unequal criteria for males/females were still early 1960’s. If I had it to do over again, I would have transferred out after I met my husband-to-be my Freshman year. He was smart and he did that. I’m stubborn though and wanted to finish where I started. I remember the first week when I received my first demerit. I still have every demerit I ever received. Back to that in a minute…

Some Background

You see? In high school I was “the weird one”. I had some close friends, which coupled with my dream of “leaving forever”, was part of the reason I survived high school. I grew up in a legalistic, religious background. It was a loving home… and most of what I experienced I wouldn’t change because I’m sure it is a part of who I am today (and I happen to like who I am today). However, in high school I was not allowed to do anything OUTSIDE OF SCHOOL. No “dragging main” on Friday and Saturday nights. I wasn’t allowed to date until I was 16 years old, and by the time I hit that milestone everyone thought I was “weird”. I didn’t get to go to movies or dances. I got really tired of people thinking I felt as if I was better than everyone else, when the boundaries put in place were not of my choosing. I was bullied. I’ve never really talked about it to many people. Classmates would probably be shocked if they knew some of the things that happened to me when I was caught in the gym alone, or in the hallway on the way to Study Hall. One of my bullies (a second cousin one year older) would actually follow me into the bathroom (he was male) and shove me around just for kicks. Another bully, also one year older, not only shoved me around and called me names, but he pinched private parts, threatened me with horrible death threats, and basically made my life hell. I would just see him coming and start to have a panic attack. I learned to duck into safe places like the office, or favorite teacher’s rooms “just to say hi” to escape an encounter with him. One of the things he constantly pounded (quite literally) into me was that I thought I was better than everyone else because I was so “holy”. This is the baggage I took into college with me <smile>!

Yay! A Demerit!

By the time I was 18 and started getting written up (for really ridiculous things), I began to really excel at breaking stupid rules. Sure, I got a LOT of demerits but I did plenty of things I never got caught for either. I don’t say that in a bragging way. My point is that I really was proud of having proof on paper what a “rebel” I was. I even sat through some “sermons” from hall monitors and dorm mothers because of what my last name was. My family name was known at this university and they couldn’t believe I wasn’t behaving “perfectly”. I got married young and tease my husband that it was “just to get out of the dorm”. I even received some demerits after I said “I do“… for sitting to close to my husband in chapel. *rolls eyes* But ya know something? I hung on to every single one of those demerits because they were important to me. They represented a turning point in my life. I finally realized as a young adult that I could make decisions about what I would – and wouldn’t do – by myself. I really filled my lungs deeply with the freedom of that feeling! Demerits were received for not meeting someone else’s expectations. Now I could determine what my own boundaries were, what my expectations were for my own life.

I’m a person of faith (and haven’t tried to hide that on here), but I like to think I really live my faith and am a REAL person. Life isn’t about rules and regulations. Nothing wrong with some of those as they keep us on track, help us reach goals, and provide security. However, these rules and boundaries are only good when they set us free, not when they cripple us. Trying to follow someone else’s rules will only get you a box full of demerits. You have to believe what you live and live what you believe.

Life Turning Point

My college experiences and changes set the stage for how I handle life today. It was a turning point for me. I stopped apologizing for who I was, and felt comfortable in my own skin because *I* had made decisions and set standards for myself that I approved of and felt comfortable with as well. If someone didn’t like what I did, I gently (OK, sometimes it wasn’t gentle) argued that I respected their choices, so they should respect mine. I learned to be responsible for ME. I wanted to live a transparent, REAL kind of life, and wanted to make a difference because of that “realness”.

I had single-sided deafness from a car accident at the age of 6-years-old. I had my last ear surgery at the age of 18. I STILL think it took us all by surprise when I developed rather rapid, bi-lateral, progressive, sensorineural hearing loss after the birth of my kiddos. At the same time, I developed Meniere’s disease (although I didn’t know what it was at the time). I determined early on what kind of “person with disabilities” I wanted to be. I would be responsible for who I am and how I cope. My top TEN decisions that turned my life around:

1. It is OK to grieve. It is OK to scream.

I learned how important it is to give yourself permission to FEEL. Bottling up those feelings only leads to physical and emotional problems.

2. Discover your “safe people”.

I’ve blogged about this before. However, find who is “safe”; cherish and nurture these relationships. (Some of those posts are HERE, HERE, and HERE.)

3. I can “be deaf and have a balance disorder” however I want!

Disability and invisible illnesses are often unique and you may not share exactly the same symptoms as another. Own who you are. Do what makes you comfortable with your “new normal”. For me this means bling-bling on the cochlear implant, bright canes and assistance dog. I am far better served to make the invisible, visible.

4. When necessary, get professional help.

There is no shame in seeking help. Finding a trusted, objective professional can be very beneficial for a variety of reasons. If you aren’t happy with who you are seeing, find someone else.

5. When necessary, ASK for help from others.

There is no shame in asking for help when you need assistance. I have never had anyone turn me down if I ask for help getting to my car, or to help me identify what sound Chloe is zeroed in on. In spite of the negative headlines, most people are nice. Most are glad to help when asked and feel good about offering assistance. (There is a trick to this though – you DO have to ASK. If you are an independent peep like me, folks have learned to wait to see if I ask for help).

6. Believe you can make a difference.

I don’t care what your limitations are. I have never met ANYONE that didn’t have a way to make a difference – to be a catalyst for positive change. Our disabilities don’t limit us – WE limit ourselves.

7. Avoid negative people.

We all have these folks in our lives. But you can limit your interaction. Set boundaries. Protect yourself.

8. Dream big. Have goals.

Just because special challenges “rocked your world” doesn’t mean you can’t have short-term and long-term goals. Your attitude is the only barrier to achieving these.

9. Write. Share. Take photos.

Thinking is great. I recommend THINKING. However, the single most powerful tool I have is my writing. I know others who draw, take pictures, or attend support groups and share. Make sure your “new normal” is something tangible, something you can look back on and identify and recognize change.

10. Don’t work at meeting someone else’s expectations.

If you haven’t learned this already, here’s a news flash. You can’t please everyone. It is healthy to have expectations for yourself, but those alone are all you should work towards.

Have you ever received “grief” for not following someone else’s directions about how to live your life? As a kid, this is OK because we need older (and sometimes wiser) folks to give us direction and instill good habits. But as an adult, you are responsible for you. Don’t apologize for choices you have made. If you deal with your challenges a certain way and it works for you, pat yourself on the back. Be careful though. Like ALL people, we can become focused on self. That isn’t what I’m trying to encourage here. We need other people. Don’t isolate yourself and say, “to heck with the rest of the world”.

Denise Portis

Advocacy ≠ It’s All About Me

Published on February 17, 2014 by hearingelmo6 Comments

Yup. Like most of the Atlantic coastline, we’ve been getting the snow. Enough snow that warranted a “whoops Denise” accident with two emergency room visits to follow. But hey… that’s OLD NEWS now so I digress…

Last week, most schools closed both Thursday and Friday. Since my entire family works at a school, that meant we were all home.

Together.

In the same house.

By Friday afternoon I was BEGGING my husband to get me down the hill and out of the neighborhood. We unburied the car, unblocked our space that the snow crews had “accidentally” blocked off with huge mounds of snow, warmed the car up for ten minutes, and escaped.

It was also Valentine’s Day. My husband knows better than to get me chocolate or flowers. I love cards. I love to eat out. (Something to do with not having to fix it or clean it up?) So we went on a “date”. I was thrilled. Not only had I escaped the house but now I was going out to eat a late lunch for Valentine’s Day.

I’ll admit it. I wasn’t thinking about “pottying my service dog” at home where I had cleared out a space in the grass so the dogs could easily go. My mind was on one thing. Escape. So by the time we arrived at the restaurant, it took seconds for me to realize my mistake. I had forgotten that snow plows pile up the snow on the mulch, grassy areas, or right on the other side of the sidewalks so that the walkway is clear. You can only get to the grass if you climb up a huge man-made snow drift! We got out of the car and my husband looked around.

“Gosh. Can you believe it? What are people with service dogs suppose to do?” he said with heartfelt exasperation.

I looked at him quizzically for a second or two before responding. “Ummm. It’s not THEIR fault that I didn’t take care of pottying MY service dog before I left home”.

I was so proud of myself. I practically beamed from the inside out. There may have been a faint glow coming out of my ears and nostrils. Yup. I’m pretty sure I was beaming.

My Problem Isn’t THEIR Problem

You see? The only person who is responsible for making sure my service dog’s needs are taken care of are ME. There was a time when I advocated very poorly. Do you know I never once improved my situation by poorly advocating? Poor advocacy is accomplished when your attitude is wrong. These wrong attitudes can include a critical spirit, self-pity, self-righteousness, indignation, pessimism, and a persecution complex.

Sometimes people with invisible illness or disability advocate poorly because we are fed up. Maybe you have faced very real discrimination. This can make us feel defensive. Worse? It can make us go on the OFFENSIVE. However, advocacy is similar to a trial. We plead our case, provide evidence, and attempt swaying another to do the right thing and perhaps facilitate change, follow the law, understand our predicament, or simply raise awareness.

It was not the responsibility of Outback Steakhouse to make sure my service dog had an easily accessible place to potty before entering the establishment. Had I gone in and demanded accommodation for something like that I wouldn’t have gotten very far. I did let them know that the crew they hired to plow their parking lot had piled a bunch of snow up in a handicapped space, “… and what was someone to do who wanted to eat out and had mobility issues, needing the space?” (I’ve noticed people listen to a person with disability advocating on behalf of another with disability).

Unfortunately, this doesn’t mean that you never have to…

“lock and load” (Ok. That’s is a bit much, yes?)

“gird up your loins” (Umm. Creepy much?)

“put up your dukes” (*rolls eyes* What is this? A boxing match?)

FIGHT FAIR. That’s right. Sometimes you may have to fight to make sure your rights as a person with disability or invisible illness are upheld. But remember, this is about equality, not superiority. In the end, you want to sway others to your way of thinking or to understand the law. This isn’t about special privileges, recognition, or “it’s all about me”. That has never defined advocacy.

Denise Portis