Why YOU Should be a Disability Advocate

In a recent class discussion, I asked my students what advocacy, community service, or non-profit organizations they were involved in and what prompted them to do so. Young Americans get a lot of flack, but you’d be surprised how many are fully committed to various causes. Social justice issues are “the new sexy” and students often pressure their peers into doing something that matters.

When I ask them these questions, most of the time there really is an important reason they volunteer for “this or that” cause. They love animals so volunteer at the SPCA. Their mom died of cancer so they volunteer and walk for a Susan G. Komen breast cancer event. They work twice a month at a soup kitchen because they have been hungry before. We normally have a connection to what we advocate for and this reason drives our passion and commitment. “Volunteer Power” explains that #1 reason people get involved in something is because that “something” meets their needs (Volunteer Power, 2017).

I am a long-time advocate for the disability community. It’s hard to say if I would be doing what I am if I weren’t a person with disability myself. Because my issues are not singular, I like to think that if it hadn’t been, A) acquired deafness, that got me involved, it would have eventually happened anyway because of B) Meniere’s disease and C) Post-concussive syndrome. 

I don’t think people realize how powerful advocacy – big or small – is for groups that are the same AND different than you are. “No Stigmas” explains how powerful the advocacy of those who do so on behalf of others… for groups that have nothing in common with who they are as an individual. Why? Experts believe that passionate advocacy can be mistaken for self-serving bias (No Stigmas, 2017). The more I learn about people with disability, the more I am convinced it is all of our responsibility to advocate for this population. May I try to convince you of the same?

How Many of Us Have Disabilities?

In the United States, 24.4% of the population over the age of 18 has a disability (CDCP, 2016b). Y’all? That’s nearly 1 in 4 people! The Disability and Health Status Systems and supporting research suggest that 17% of those living with disability have a congenital condition (CDCP, 2016b), while the remaining 83% have an acquired disability. An acquired disability is defined as a limitation in normal function of vision, hearing, movement, thinking and remembering, learning, communication, mental health, or social relationships (CDCP, 2016a). Many acquired disabilities are easily identified as visible assistive devices, tools, or mitigating technology are used by the individual to mitigate limitations. Numerous acquired disabilities are considered invisible or non-obvious and are only apparent to others should the individual choose to disclose their diagnosis. Whether acquired disability is visible or invisible, an individual may find themselves coping with both new stresses and new opportunities for growth.

Advocating on behalf of people with disabilities–even if you are not a part of this population–means you are very likely doing so on behalf of someone you know. Advocacy doesn’t mean you have to volunteer 15-20 hours a week for a cause. Advocacy can include that, but most of the time it means being someone’s friend. It may mean that when you are on hiring panels, you remind others of the value of hiring someone with a disability. Joni and Friends (2017) explain that hiring people with disabilities has the following advantages:

• Including qualified employees with disability in your workforce communicates a strong message of inclusion to your local community.
• Employees with disability often make good team players – that means increased productivity in work groups.
• To include someone with a disability diversifies your workforce, creating a stronger appeal to a diverse consumer base.
• Employees with disabilities often enjoy a long tenure with a company and are less likely to resign or quickly move on to another job.
• A job can mean a great deal to an individual with a disability and translate into equal or higher job performance rates.
• Employees with disability are usually happy to work on creative solutions regarding reasonable accommodation or restructuring of job hours.
• Including someone with a disability in your work force raises the bar on everyone’s awareness and sensitivity toward someone facing hardships (para. 3).

Advocacy can mean support during national awareness walks or campaigns for a disability group. It can mean choosing not to use derogatory language when referencing a disability group, nor allowing others to do so (See A-Z Derogatory Terms).
“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth” (William Faulkner).

You Will Likely Eventually Be a Member of This Group

Finally, you will very likely be a person with disability one day. Making a difference NOW, simply establishes a foundation for self-advocacy and “right thinking” later. Let’s do a little exercise (something I learned from my ADA Leadership Network training):

Below… pick a person who is not “RED” yet. The red indicates someone with a disability. Pay attention to who you pick and don’t cheat and switch it up later! Pick one person:

In the USA, 10.4% of Americans have a disability if they are the ages 15-24 years. Now let’s bump up an age group. Find your SAME person:

—————————-

In the age group of 25-44 years, that percentage moves to 11.4%. Does your chosen person have a disability yet? Let’s get older:

—————————

45 – 54 years, the percentage of Americans with a disability moves to 19.4%

—————————-

55-64 years, we are now at 30.1%

—————————

65-69 years, we are now at 37.4%

—————————-

70-74 years – 43.8%

————————–

Should you live 75-79 years, the rate grows to 55.9% of Americans. Did the person you pick, end up “red” by the end?

Y’all? If you do not struggle with normal function in some aspect now, chances are as you age – you will. Develop relationships and advocacy “know how” NOW, even before you need it.

So? Have I convinced how important it is for ALL of us to advocate for disability rights, inclusion, and normalcy? If I haven’t – that’s ok. However, I hope at the very least you come away with a little more information about an often times marginalized group. As always, thanks for reading!

Sincerely,

L. Denise Portis

©2017 Personal Hearing Loss Journal

Centers for Disease Control and Prevention (2015a). Disability and health. Retrieved March 30, 2016, from http://www.cdc.gov/ncbddd/disabilityandhealth/types.html

Centers for Disease Control and Prevention (2016b). Disability and health data systems (DHDS). Retrieved March 30, 2016, from http://www.cdc.gov/ncbddd/disabilityandhealth/dhds.html

Joni and Friends. (2017). Disability and employment. Retrieved March 21, 2017, from http://www.joniandfriends.org/blog/disability-employment/

No stigmas. (2017). How to be an advocate for others. Retrieved March 20, 2017, from https://nostigmas.org/peer-advocacy/

Volunteer Power (2017). Why people volunteer. Retrieved March 19, 2017, from http://www.volunteerpower.com

Sometimes It Takes Work to Stay Positive

uphill-battle

When my alarm goes off, Milo (who is laying in a ginormous dog bed on the floor by me) hops up and nudges my face and arms. There are days where my eyes pop open and I lay there for a few minutes giving myself a pep talk. Milo isn’t into pom-pom’s and cheering… he just wants breakfast. This means I can’t lay there contemplating all that is “Denise” very long.

Do you ever have trouble getting out of bed? I’m not talking about because you are sleepy. I do not mean the kind of lazy-bone feeling you have when it is rainy and cold out and you just want to stay cuddled up in the blankets. I’m talking about the weariness that comes from having to psych yourself up

one

more

day.

It can be difficult. Don’t get me wrong. I recognize that I have so much to live for and that I am blessed. PsychCentral recently wrote about what NOT to say to someone with depression. The piece included a great number of platitudes that people say to someone who struggles with depression. Some that I hear a lot are:

  1. There are a lot of people worse off than you.
  2. You have so many things to be thankful for! Why are you depressed?
  3. Happiness is a choice (this one kills me because it is actually the title of one of my favorite books!)

Several years ago I saw a quote on social media that said, “Telling someone they cannot be sad, depressed, or anxious because others have it worse is like saying someone cannot be happy because others have it better.”

Yes. I do know people who are “worse off” than I am. But by what measure?

Like many with chronic illness, or visible/invisible disabilities, I have good days and bad days. I would suspect that most people who talk to me each day in person – at work, class, check out lines, or walking – believe I am a very cheerful person. Fact is? I work at it. It does not come easily to me.

At 50 years old, however, one thing I have learned is how powerful a smile and encouraging word are to others. I try not to think about my limitations. That’s so… limiting! Instead, I work to make a difference each and every day, even if all I have the energy or ability to do is be genuinely friendly and encouraging.

I love Fridays. On February the 17th, I posted this picture and caption on FaceBook:

Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which... was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride. 🐾
Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which… was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride.

What I did NOT post, is that later that day when I arrived home weary but safe from a long week doing what I love, I had a seizure. Right there on my front porch. It lasted all of ten seconds and I knew 20 minutes beforehand it was coming. Milo was safe in the back yard and I a l m o s t made it to the door. (No worries – I know that a frontal head bump, fatigue, and Meniere’s flare are the recipe for a “fall down go boom”. I have regular contact with my doctors and “we’ve got this” – promise!)

When I got home from work today, one week later, I find I am still thinking about that and a little peeved about the permanent issues of having multiple concussions. Each Friday, I feel as if I have pushed a “happy Denise” uphill all week long. It is hard. It isn’t so hard that I cannot do all that I CAN DO. Sure, I may be naive to think that my smile and small acts of kindness make a difference. But I choose to believe. I believe because someone else smiled at me and encouraged me. When they did I had the wherewithal to press on – one more day.

smile-and-encouragement

Denise Portis

©2017 Personal Hearing Loss Journal

 

Half a Stick of Juicy Fruit Gum

juicy-fruit

I miss my grandmother (Vina Jewell Burhenn – Isn’t her name the GREATEST?). As I stopped to think about how to approach my subject for Hearing Elmo this week, I found myself thinking of a very special memory.

It was always a treat to sit with my grandparents in church on Sunday. I think I convinced myself that Grandma would let me get away with more, and my mom and dad were going to make me be “super good”. The pastor was my uncle, Cecil, and so even as a little kid we were expected to be an example to other little kids in the church because we were “kin”. So whenever possible, I always sat with Grandma because I could get away with more – AND… she always gave me a 1/2 stick of Juicy Fruit gum.

Naive kiddo that I was, the truth was that Grandma made me be even more “golden” and because we sat three rows from the front, my parents sitting behind – and to the right of us – could STILL see everything I did.

In the earliest years, I don’t think I ever questioned, “why a HALF stick of Juicy Fruit gum?” I will have to hazard a guess that around  8 or 9 years old, I finally whispered and asked Grandma, “why a HALF stick?”

“When you break it in half, does it let the magic pour out?” I whispered.

Response: Blank Stare

“When you break it in half, is it teaching me to share?” I queried.

Response: Blank Stare

“When you break it in half, is it to make sure I come back for the other half?” I said softly, and with strategic wisdom.

Response: “Denise, I gave you a half a stick because it is ENOUGH”.

Oh. Well gee. I know my child-brain kinda hated the logic of that.

My grandmother would dole out half sticks of Juicy Fruit gum because it was ENOUGH. (Side note: What a shame that it was never Doublemint gum as I would have discovered at an earlier age that I was allergic to spearmint).

It Simply Doesn’t Take MUCh to be ENOUGH

I’m told I take after my grandmother in a lot of ways. Here are just a few FREQUENT reminders from siblings and parents:

  1. I doctor my own ailments to my detriment. And I have Google, which Grandma did not!
  2. I love animals – many times more than people.
  3. I expect justice and fairness.
  4. I will respect you, but by golly you better reciprocate. If you don’t we’re gonna argue!
  5. I can be stubborn.
  6. I don’t mind confrontation. (Likely only recently doing confrontation in the right way).

I think one of the things I get down about the most as a person who is differently-abled with a chronic illness, is that I often worry and fret about my limitations.

I can’t hear on the phone so I am not able to easily call up a friend and ask how they are doing.

I can’t see to drive at night (headlights trigger vertigo), so I cannot go to parties, meet-ups, etc. with friends at night. Most folks do stuff later in the day.

I can’t just drop everything and go to a friend’s rescue. My own limitations require that I determine if I’m physically ABLE. I must ready my canine partner, Milo. I am not a 9-1-1 friend. That grieves me.

You may have limitations that at times, cause you to feel as if what you have to offer is not as valuable. You see how other friends reach out to each other and are discouraged that you cannot offer the same kind of friendship. (If you’ve never read “Spoons” – you should. It eloquently describes life as a differently-abled person). You can only offer a HALF stick of Juicy Fruit gum and you are a little bit pissed off by that.

Do you know what I have learned? A half a stick of Juicy Fruit is enough. I may only be able to touch base with friends via text or Facebook, but taking the time to touch base is STILL appreciated. I may not be able to go to things at night, but when my daytime schedule allows, I can drop off a meal or come by for a quick hug. I cannot be a 9-1-1 friend and be able to just physically show up at an emergency. However, my friends know they can text me or private message me and I will drop EVERYTHING to pray, encourage, and be there for them.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” 
― Ralph Waldo Emerson

We want to make a difference. We want people to see our value. We need to be needed. We all strive for that purpose in different ways.

Maybe you are passionate about social justice issues and do all you are capable of doing.

Perhaps you are a writer – and do so to encourage, educate, and advocate.

Maybe you are an artist. Your drawings, photos, paintings, and sculptures reach out and change people.

You follow up with hurting people and ask them how they are doing NOW.

Your HALF stick of Juicy Fruit is pretty darn important. What you CAN do… what you are able to do… is ENOUGH.

Don’t let anyone tell you anything differently. If they do, give them my number and I’ll take care of it. <wink>

You have value. Believe.

Denise Portis

©2017 Personal Hearing Loss Journal

 

Coming to Terms

Deborah Marcus' blog "Visions of Song"
Deborah Marcus’ blog “Visions of Song”

It is always a treat when guest writers post for “Hearing Elmo”. I never wanted this blog space to be all about “me” and my own issues. Please let me know if YOU would like to write for the site!

Deb has been a friend for so long, I would have to stop and burn calories just to remember the when and where we first connected. I love her like a sister and her presence in my life has been a blessing. Deb writes (click the photo above to visit her blog) and is a photographer as well. As a matter of fact, I re-designed my guest bath around her dragonflies. A loving “welcome back” to my friend, Deb, as she shares some things that many of us with disability, chronic illness, or special challenges deal with on a daily basis. 

Winter
Winter

From the time I was in elementary school, I understood that life is not fair, that it’s not even a question of fairness, and that readjusting one’s perspective is something that must occur for the full expression of the self, time and time again.

Of course I didn’t think of it in quite those terms when I was 6, 8, or 10 years old, but I experienced it. I imagine we all do in one way or another, whether by subtle shifts or dramatic events that leave us no choice but to consider this a reality of being human.

Here are a couple of examples. Each of us has some of our own.

-That moment at the audiology clinic, age 9 or so, where I went every couple of years for a hearing test as there is hearing loss in my family. I heard someone say, looking at the audiogram: there it is, the mild to moderate hearing loss. I didn’t know how to read the graph at that time, but my maternal grandmother was hard of hearing and I understood it from that vantage point. I would be like grandma, hard of hearing. Reading lips. I didn’t understand that I would lose the ability to hear birds singing, or the many nuanced experiences that we take for granted when we are able to hear, but I was able to internally adjust to my reality.

-A different moment, after a terrible event at home. I went out into the yard, in the dark, in winter and lay on the snow-covered grass. I looked up at the clear sky, full of stars, and as my breathing slowed to a normal rhythm, thought how beautiful it would be if I could just fall asleep right there…and never wake up. After a while, I felt something move me. You might call it God. I internalized it as a spirit of some kind. It said to me: No, it’s not your time. Stand up. Go back inside and warm up. Now I understand that as either depression, or self-preservation, or a little of both. I did not mention this to a soul until many years later.

Spring
Spring

In order to move forward after life-changing events, one has to be able to reckon with the forces within and without. I was motivated in the first example away from despair. As I looked towards my grandmother who could not hear, though it was beyond me at that age to recognize how small her world had become by that point in my life, I could see that she had her faculties and was loved by many in her circle, and so I had expectations of adjustment but did not despair. In the second example, in despair, I can’t say it was all me figuring out what to do, but had an experience that told me we can seek and find the resources to continue on.

Summer
Summer

Fast forwarding to today, I have experienced a number of life-changing events, some of which constitute frank disability. I have had orthopedic issues since middle school. I am now completely deaf without my cochlear implants. I am a survivor of mother-daughter sexual abuse, and with that came some episodes of physical and emotional abuse. I’ve experienced periodic vertigo since the occurrence of one of those physical episodes, when my mother, in a fit of rage I’ve never been able to parse out, pushed my 16 year old self backwards down a long flight of stairs. I only recall coming to at the bottom of the stairs, the crawl back up, the screaming that came from my mother’s throat that suggested that I was somehow at fault for my “accident”. I have struggled with (undiagnosed) depression for years. I’ve coped with physical pain for most of my life, with degrees of it varying over time. The most extreme of these pain issues resides in my facial nerve, with a diagnosis of trigeminal neuralgia.

Autumn... reflections
Autumn… reflections

Throughout each of my 53 years, I have found the will to continue on. Recently, I had to consider the prospect of foot surgery. Wanting to avoid it at all costs, I explored physical therapy, at the encouragement of an acupuncturist I see from time to time. My hope is still to either avoid surgery altogether or be better equipped to manage if I did. During my initial evaluation, I shared my vestibular/balance history. I had recently had the courage to tell my primary doctor about the trauma when I was 16, the vertigo, the neck pain, and now the increasing balance issues. It became clear at the first assessment that my vestibular system is in extremely poor shape. The physical therapist wrote “fell like a tree” in the assessment notes. I worked extremely hard both in therapy and on home exercises from September into December. While we made some modest gains on the foot issues, there was no progress on my balance issues. In December, my PT and I had a heart to heart. It is pretty clear that as a result of multiple factors, my vestibular system is not going to get better. I can continue to work on the vestibular exercises in effort to slow the progression, but that’s probably it. While all this was happening, my primary suggested I try a small dose of medication for the chronic depression, which I was forced to acknowledge, for the sake of self-preservation. We are working on finding a medication I can tolerate and which is a help to me.

It’s strange territory to be in this place where I feel more than a little bit at a loss. Where did my seemingly inherent sense of “carry on!” go? I’ve made adjustments all through my life, and did good works, and have had wonderful relationships and ending relationships and work and play and the same constellation of things that everyone else experiences in their own fashion. I wonder, though, who am I now? I have had moments of despair, when the thought that going to sleep and never waking up would serve me and everyone I know well. The only reason I feel strong enough to write this out in a semi-coherent fashion now is because I have begun to hear that spirit voice again, that says: No, it’s not your time. Stand up. Go back inside and warm up. To that end, I’m focusing on what my new life will look like, how to take the best care of myself possible, and how I can possibly continue to be source of support to others.

Stay warm, friends.

Deborah Marcus

Visions of Song blog: CLICK HERE

 

Civility and Respect

img_3470

Milo-bear and I have been partners eighteen months now. I would have to say most of the wrinkles have been ironed out. I suppose anyone who has had a service dog long enough to be on #2, will experience some adjustment as you learn that dogs really are DIFFERENT. Milo is a different breed, sex, size, and personality. He has a different skill set than Chloe did. Poor guy was told “good girl” for at least a year, so I think being a different sex was one of the hardest verbal changes I had to make! I think that part of the reason things have been synced so well just recently, is that Milo trusts me now. For such a big guy, he’s pretty timid. He bonded to me quickly, but it took him quite awhile to understand that I was going to take care of him as much as he was going to take care of me. Milo respects me now (though he has loved me for a really long time).

If you know anything about dog training, you know that a dog doesn’t have to fear you to respect you. As a matter of fact if your dog fears you, then you haven’t taught it anything about respect and trust. Milo and I respect each other and are a great team.

I’m part of a committee on my campus called the “Civility and Respect Campaign”. Part of the Social Justice Collaboration, the committee meets to discuss ways to foster civility and respect for all persons on campus. The hope is that this campaign will strengthen a spirit of community. You don’t do that be fearing one another. Having been a part of the disability community for 25 years now, I have learned that differently-abled people are often feared. That isn’t a good thing. Below are some reasons I have come up with from my own life’s experience. You may relate to some of these.

  1. We are feared because our diagnosis is not 100% understood.

I have learned that most people want to do the right thing. I would have to hazard a guess that most of the misunderstandings between some with special challenges and folks without, is that communication breaks down. If we want to be treated in a civil way and with respect, we have to learn to communicate our needs with civility and respect.

Isn’t it easy to get riled? My fuse isn’t as short as it was when I was 2 decades younger, but certain attitudes can really get me bent out of shape. When people approach you with an ugly demeanor and sportin’ a ‘tude, I have to work at not responding in the same manner. I literally take 5-6 seconds to respond when someone gets up in my face about why I’ve parked in handicap parking or why I’ve brought a (vested and clearly marked) dog into their store. These few seconds allow me to calm down and resp0nd appropriately. Good communication is not responding in like kind. If someone has a rotten attitude, the conversation can be turned around if you respond in the right way. Only one time has a person continued to “go off the deep end” when I was talking to them. I finally said, “I need to talk to someone that can stay calm”. The person evidently had enough sense to know they couldn’t, so they actually DID go retrieve someone else for me to talk to instead. It took less than 5 minutes to clear up the misunderstanding.

I’ve had conversations go the other way too. A well-meaning Giant grocery store employee came up and asked me if they could get my service dog some water while I was busy trying to retrieve a cart. The person was kind, but almost ingratiating. After I thanked them and said that my dog was fine “but thank you… could you help get this cart unpinned?” They then asked if they could help me get a motorized cart set up. (This after I asked them nicely to help me unpin a cart to use). Honestly? I’m sure my face spoke VOLUMES. I was thinking, ‘I’m standin’ here with a cane and a calm service dog. (After struggling and jerking on it on my own) I now have a cart to lean against as well. I have a list in my hand and would like to start shopping, only YOU are in my way and delaying all of that!’ The look on my face must have been scary. The employee held up their hands and said, “Oh now calm down I’m just trying to help”! (Really? Is that why you helped me unpin a cart?) Enough seconds had rolled by I finally trusted myself to speak. “Thank you so much for wanting to help. I’ve had special needs for a very long time and if I need additional help I am quick to ask for it. My service dog makes me a very independent shopper and I would really like for you to stop embarrassing me and making a scene”. The employee looked horrified and stomped away to go belly-ache to a fellow employee (likely about the unreasonable disabled person).

Was that the right thing to say? Hmmm. Maybe not. I know I kept my voice down and stayed calm (a herculean effort), but I’m sure my expression was dangerous. When I got to check out, a cashier I often see at the store said, “I apologize about earlier. They are new and don’t know you at all. They handled that all wrong and I took some time to explain how things should be done for shoppers with special needs”. I thanked them and finished checking out, mentally reviewing the whole thing in my head again and just amazed I didn’t deck the person with my pocket book. (Hey. It’s heavy and huge and would have done some damage)

It was a poorly communicated problem and solution.

2. We are feared because a previous encounter conditioned the person to believe we were going to be a problem.

Always… ALWAYS remember that what you do and say will affect the next differently-abled person who comes into that store, restaurant, doctor’s office, or other public venue. It’s amazing to me how a “knee jerk” response is conditioned. Do you know I’ve been wrong about this idiom for my entire adult life? I thought a “knee jerk response” meant the person said something they knew they shouldn’t have and so jerk their knee up to protect their (ahem) private parts to keep from getting kicked. As much as I like (even prefer) MY definition, apparently a “knee jerk response” is an automatic and reflexive response done without examining causes or facts. The origin of the word: From the tendency of the knee to jerk involuntarily when hit sharply, properly called the patellar reflex.

If you have ever had a “bad encounter” with a fearful person, they may have had a really bad interaction with someone before you. I was involved with a training at the police academy in our county and explained issues people with a cane and service dog may run into. I said, “Don’t take the person’s cane away. It’s a piece of adaptive equipment geared to keep them upright”. A commanding officer spoke up, “I’ve been hit by one of those. We have to take away something that can be a weapon!” I know my mouth dropped open. I had never thought of that! Together we worked out a way that the person could be asked to sit and the cane taken away safely. This officer’s experience created a predisposed suspicion of anyone wielding a cane.

As the differently-abled person, we have to remember two things. 1) The idiot person we are dealing with may have been conditioned to respond this way. 2) How we reply will affect the idiocy in the future. Sometimes I chant in my head, ‘BE NICE, BE NICE, BE NICE’ which means: “Denise! YOU be the bigger person and turn this conversation around!”

3. We are feared because… they are an idiot.

Sigh. No nice way to even put this. Sometimes? Sometimes you just need to find a different cashier in your favorite grocery store. Doctor’s office intake people being demeaning? Find a new doctor. Limited options? Place a formal complaint. (See: 1) https://www.ada.gov/filing_complaint.htm and 2) http://www.abilitycenter.org/blog/how-to-file-a-claim-against-a-business-for-violations-of-the-americans-with-disabilities-act/).

Civility and respect go a long way. If you cannot resolve a situation, file a complaint by any means at your disposal. Good luck out there and – erm – keep that knee up! Because I still like my meaning better!

Denise Portis

©2017 Personal Hearing Loss Journal

 

You Don’t Just Decide

im-fine

… to not be depressed.

I should have gone into acting. My students and coworkers would be so surprised to learn how tough this past month has been. I have been struggling to write, but honestly? I just cannot. Not yet. (I’m in a bad place, but I will and very soon!) So how blessed and relieved was I to receive permission from a guest writer at Hearing Elmo, to post a narrative she wrote on FaceBook about depression? Ruth Fox has been a friend and fellow “chronic illness warrior” for a good number of years. I have trouble remembering when we first met even and we keep up-to-date on social media. Ruth lives in one of my favorite places… Tennessee. She is a photographer and writer… and a friend who understands invisible illness and disABILITY. 

Before I copy/paste what she has to share, as a reminder: Hearing Elmo is open to any and all who would like to share about this life we live. It can be anonymous, open and transparent, or somewhere in between. 

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As a survivor of over a decade of profound life threatening depression, my heart goes out to the many people with depression who are struggling through the holiday season.

Depression is a vicious disorder, and not one easily dealt with by the affected individual, their family or friends. Like many chronic disorders, depression can be managed through medication, therapy and healthy mental, social, spiritual, and physical life choices.

Depression continues to be a chronic disorder for me, yet the devastating effects that it’s had on my life are greatly minimized due to my efforts accommodate it, as I have accommodated other physical disabilities.

Depression isn’t the consequence of what happens to us in life. Many of my friends and acquaintances have experienced the worst that life can offer. Yet, though they may be grieving, sad, or very frustrated and alone in their experiences, they don’t struggle with depression. This reinforces the fact that depression is, as scientifically proven, a physical disorder of brain chemistry; not a consequence of life circumstances.

Depression makes all aspects of life more difficult. The jovial atmosphere of holiday celebrations often exacerbates its symptoms. The challenge of coping with depression is similar to dealing with other disabilities; to accommodate it in such a way as to minimize the effect that it has on daily life.

For me, the first step was getting and maintaining medical treatment. Next was determining what life activities reduced my depression symptoms and what ones exacerbated them. Then reorganizing my activities so that they tilted the balance towards helpful activities. This occasionally required abandoning what was considered socially acceptable or traditional, which was very difficult to do at first.

Positive self-talk is an exercise I learned to use regularly, because one difficult depression symptom is the emotional twisting of reality. When depression is out of control, all actions or statements of other people tend to be taken extremely personally. If these are perceived as negative the result can be irrational tears, obsession over disappointments, and self-pity. The effect can be so strong that it paralyzes functionality. One’s sense of confidence and self-worth is often mistakenly placed into the hands of others.

Positive people, who accept the right of other people to do what works for them, even if it was a bit unconventional, are the kind of people my husband Gary and I want to be, and we try to surround ourselves with similar people. Depression isn’t fun, any more than all of other the challenges we face, but it doesn’t have to diminish the quality of life.

Ruth Fox


 

One-Eyed, One Horn, Flying Purple People Eater

one-eyed-one-horn

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:

  1. Determine if there is any merit in what they are saying. If so, does it mean I need to change some behaviors?
  2. 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?
  3. 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:

  1. 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.
  2. 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?

  1. 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.
  2. 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).
  3. Be realistic about extremes and over-generalizing. I love these 7 “steps” to eliminating negative thinking. Check them out here: CLICK
  4. 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

©2016 Personal Hearing Loss Journal

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/