Your Responses Matter

I need your help. I am in the data collection stage of my dissertation and need online survey participants. The focus of my study is Posttraumatic Growth in persons with acquired disability and chronic conditions. Below, you will find the formal invitation to participate. If you have followed this blog, you know that I firmly believe and hopefully model that people can and DO lead successful and impactful lives even after the diagnosis of an acquired disability, chronic condition or mental health illness. Individuals whose lives have been forever changed by a “new normal” can and DO give back to their communities and make a difference in their world. It is my hope this foundational survey research will allow future studies focusing on ability, impact and growth, of individuals like those in our disABILITY community. I hope you will consider participating and sharing the information below in emails, FaceBook, your own blogs, and word-of-mouth referrals. Although the provided instructions suggest the online survey could take up to 20-30 minutes, the participants who have completed this have spent 10 minutes or less. I need your help both as individuals and to pass this opportunity along to others. I require a minimum of 135 responses so every completed survey counts! Thank you!


I would like to invite you and your contacts an opportunity to participate in a study about acquired disability and posttraumatic growth. I am a doctoral candidate at Walden University and this study is part of my final coursework towards a Ph.D. in General Psychology—Teaching Option. The reason for this study is to discover if people now living with an acquired disability experience posttraumatic growth, or positive change after a difficult life event such as the diagnosis of an acquired disability.

Participation in this study is completely voluntary. To participate, you must be at least 18 years of age, able to read and write English, and be able to get to the Internet. You must be at least 12-months past the difficult life event that produced an acquired disability or diagnosis.

There is only a minor risk involved in participation. This may include the emotional process of determining how acquired disability has changed your life as you respond to the questions in the survey. The possible benefits of participation may be the recognition of the positive changes that have become a part of your life since diagnosed with acquired disability.

Should you wish to voluntarily participate in this research study about posttraumatic growth and acquired disability, you may click on the following link and it will direct you to the first page of the study. https://www.surveymonkey.com/r/BFBP2F3

You are encouraged to share this invitation with others who also live with acquired disability. People taking this survey may know me as a disability advocate and Vice-chair of the Anne Arundel County Commission on Disability Issues, a part-time psychology instructor at Anne Arundel Community College, an Online disability blogger at Hearing Elmo, a client/mentor at Fidos For Freedom, Inc., or as a participant of Online disability communities. None of these roles are connected to this study, and the survey information is separate from these roles and used solely as part of a dissertation study.

Thank you for your time and willingness to share this opportunity with others who live with acquired disability.

Denise Portis, M.A.

Doctoral candidate, General Psychology—Teaching Option

Walden University

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My Name is Milo and I Was Afraid of Fidgets

 

My name is Milo and I’m afraid of Fidgets

I can’t tell you how much fun it is to be on service dog partner #2. Milo (and Chloe), both trained at Fidos For Freedom, Inc. and could not be more different. Milo(bear) is timid by nature. When he is on task, however, he is very focused (and less distracted by wanting to love on EVERYONE like sweet Chloe was). However, his timidity makes introducing new things a bit of a trial.

You may be familiar with a new and popular “thang” called the “Fidget”. They are actually great classroom tools for people with ADHD. I’m all about classroom accessibility, so if things like this can help students concentrate? Well, please come with your Fidget.

Unfortunately it is “new to Milo”. Milo began seeing a lot of Fidgets in the classroom. They spin – and to my knowledge don’t make a noise – but who knows if a dog can hear even this quiet “whirrrrr”? The only problem was that Milo was terrified of them. He’d stop mid-task if he saw a Fidget in use and walk around behind me to peek around my hip.

NOT VERY HELPFUL.

I knew I was going to have to do something to get him use to these spinners. He couldn’t continue hiding under the nearest desk. Since I need him to pick up the items I constantly drop, I needed him to be able to focus in spite of Fidgets around him during class.

Desensitization

After talking to a couple of trainers at Fidos For Freedom, Inc., we decided the way to go was to desensitize Milo to the Fidgets.

… so I bought one.

I opened it up, put the center button between index finger and thumb, and “gave it a whirl” with a flick of my right hand.

Not the WISEST thing to do since Milo(bear) was sitting right next to me. He made a strange sound in the back of his throat and took off. I interpreted it as “Et tu, Brute?” (my Literature teacher-mother would be so proud).

I found Milo in the walk-in closet.

Long story short, I worked with him for 4 days in short intervals of exposure. Here is where he is now…

Hopefully, when classes start on 8/28, Milo(bear) will be completely comfortable with Fidgets. This whole “desensitization” process was good for both of us. My daughter and hubby are expecting my first grand baby in October. Milo has never been around babies. He was raised in Cumberland prison and his puppy raiser before that, nor his one-on-one trainer after… had babies around. I suspect he will have to learn to become accustomed to more things very soon. ‘Cept I won’t be spinning the baby girl around and chasing Milo(bear) to expose him. <AHEM>

Facing Our Fears – and Perhaps Desensitizing Ourselves to Them

One of the biggest pluses of having a service dog partner is the courage the partnership provides. Learning to cue off things Milo(bear) hears, that I don’t, is great! I feel safer. I can count on him to hear things before I do. I can look in the direction the “sound maker” is coming from so that I can stay safely out of the way (cars, large groups of students, shopping carts with rowdy kiddos, etc).

Because of peripheral neuropathy, I drop things all day. I’m not talkin’ about that I drop 2 or 3 things a day. I drop 2 or 3 DOZEN things a day. In the past, I would have to ask for assistance to reach it and/or pick it up. Otherwise I would risk falling because of vestibular issues. This meant I often didn’t go out and do things on my own because it was too hard to ask people for help. Milo(bear) has helped me face some of those fears because he is there to help me. His favorite task is “fetch-hold-give”. In my thinking, this isn’t true desensitization though. Milo(bear) has become an assistive tool to mitigate those challenges. It’s a way around them instead of “through” them.

As I sat and pondered whether or not I have ever truly desensitized myself to something, I realized that most learning through desensitization has come from how I chose to respond to comments, people, or situations.

At the age of 51, I have now lived more of life as a differently-abled person than as an able-bodied one. I can tell you that how I respond to challenges, hurtful comments, or discrimination is much different than how I responded as a 25-year-old. Some of this improvement evolved from exposure. Other measurable steps of improvement simply came from educating myself and learning all I could about positive advocacy. It’s not that the things people say cannot and DO not still hurt me occasionally. My RESPONSE is what has changed. A 25-year-old Denise would:

  • Cry
  • Isolate myself for days afterwards
  • Embrace depression instead of heading it off with coping techniques
  • Open my mouth and “let it rip”
  • Retaliate
  • Throw a private and public pity party (that no one ever RSVP’d to)
  • Plot revenge
  • Determine to HATE that person to the end of my days
  • Google how to put a “hit” out on someone
  • Preach at them and try to make them feel guilty with a long, drawn-out “altar call”
  • … and more equally ineffective responses.

Even through constant exposure, the 51-year-old Denise does NOT always respond in a healthy and proactive way. I still have “knee-jerk” responses occasionally, especially if it takes me by surprise. However, my new response is at the very least, more helpful to both myself and the twit that said something unkind. Now I tend to:

  • Consider the source and determine how best to respond
  • Take some time to determine HOW I want to respond
  • Determine if I SHOULD respond
  • Choose a good time and place to respond
  • Cry if needed…
  • Chant to myself “you can catch more flies with honey than vinegar” (and then ask myself if I even WANT this particular fly…)
  • Occasionally seek advice from a peer support network if it is something “major”
  • Follow through on a course of action and DON’T HOLD A GRUDGE

I have learned to do this through trial and error, but also through desensitizing myself to these situations by simply experiencing them and learning what keeps me sane and healthy in how I respond.

Let’s face it.

If you live with disability or chronic illness, you are going to constantly be faced with people who don’t understand, don’t care, or say/do inappropriate things. The 25-year-old Denise response did not improve my situation, nor did it bring peace (my zen was woefully rattled).

I do not FEAR the things people say to me or the situations I may find myself in as I live life. I know “stuff is gonna happen” and when it does, my response is MORE important than how I feel as a result of the experience.

We cannot control the things people say, nor can we completely keep our life experience with disability, “hassle-free”. I do believe we can learn to live in harmony with all the Fidgets in our lives. Being a positive advocate comes from doing things wrong sometimes and learning from it. It also comes from the discovery of having handled something well, and seeing the positive change and result from our proper response.

Denise Portis

©2017 Personal Hearing Loss Journal

 

 

 

When You Want to Smack ‘Em With Your Cane

handicapped-restroom

When you are differently-abled, going to the bathroom can be a pain in the… well?

… BUTT.

If you are partnered with a service dog, it can make the process even trickier until you get a nice routine down. Likely, one of the biggest issues for all of us is ACCESS.

In the United States, public restrooms are required to be handicap accessible. For restrooms that have multiple stalls, the number of required handicap accessible stalls depends on the total number of stalls in that location. All must have at least one, according to the ADA.

fullsizeoutput_bd

Milo, my current service dog from Fidos For Freedom, Inc., is a very big boy. A German sheprador, Milo is 80 lbs. of helpful tail wags. Between my wobbles, cane, and big boy helper, I require some room to use the bathroom safely. I will be honest with you, I use to get aggravated if waiting for a handicap stall, only for the person to exit and they looked perfectly fine to ME.

A student leader in the Anne Arundel Community College‘s SODA club (Students Out to Destroy Assumptions), reminded me during a particular scathing belly-ache rant, that not all disabilities are visible. I think it is great when student leaders can challenge long-time advocates, don’t you? Kudos.

So yesterday, I stopped in at the women’s bathroom prior to my Diversity Institute workshop, to find the bathroom empty with the exception of…

… yeah, you guessed it,

the handicap stall. I stood there (with legs crossed) and waited for the person to exit. I even took out my phone to appear less desperate. Milo’s ears perked up (indicating a toilet was being flushed), and I stepped to the side about a foot so that the person could exit safely. I didn’t bat an eye when the person who came out “appeared perfectly abled”. It is no longer my default judgment to assume the person didn’t need the larger size, rails, and access to the stall.

I was surprised, then, when the young woman, said, “Oh gosh. Sorry, I use this so I have more room for my book bag and didn’t think someone who actually needed it would be waiting!

I’m pretty sure my mouth dropped open.

I counted to ten and purposefully and deliberately maintained the position of my cane on the floor where it belonged, and said, “Yeah, there’s always a chance someone will need it who is waiting for the accessible stall!” I smiled (honestly! I did!) and scooted around her with Milo, closed and locked the door.

I was so mad I couldn’t pee. (Just bein’ honest folks!)

I have never had proof staring me in the face before. 24 hours later I am still processing it. My new default is a good one though. We cannot judge who uses a handicap stall even if there are other stalls empty.

Before you assume, remember:

  1. The handicap stall might be the only one empty when they came into the bathroom.
  2. Perhaps the other toilets are “nasty” or out of order.
  3. Perhaps it is a parent with a small child to assist.
  4. The person may have a genuine need for the stall. Some common invisible disabilities include:                                                                                                                  A) Anxiety disorders (especially phobias such as mysophobia, claustrophobia, and OCD) 

    B) Early stages of progressive diseases (MS, Rheumatoid arthritis, Parkinson’s, cancer, etc.)

    C) Digestive disorders (IBS, Colitis, etc.)

         D) Pain disorders (Fibromyalgia, Mitochondrial, and joint diseases)

         E) Chronic fatigue and related illnesses

F) Age related conditions

So… put the cane down; no clobbering innocent folks relieving their own needs.

BUTT… But —

For those of you who use the handicap stall even when there are others available and you prefer “more space”,

well… shame on you.

That wasn’t nearly as satisfying as busting someone up ‘side the head. I remind myself that I can be an unfeeling jerk and clueless twit about things I don’t understand. If we all learn to put ourselves in someone else’s shoes, the world would be more respectful and kind.

Denise Portis

©2017 Personal Hearing Loss Journal

This is My Fight Song

On “match day”, 2015.

The first time I heard Rachel Platten’s “Fight Song“, it was actually sung by a different  young woman who had faced a life threatening illness and “won”. You can find Calysta Bevier’s audition for “America’s Got Talent” HERE.

Yesterday, Fidos For Freedom, Inc. held its annual certification day. Service dog and hearing dog teams re-certify their skills and clients take a written exam. Milo and I passed with flying colors. While there, I was able to catch up with other teams. I overheard various teams refer to their service dog as their “partner in crime”, “wing man”, “partner”, “side kick”, “best friend”, and “best buddy”.

I’m a believer in the power of the human spirit. I have also seen many people who are differently-abled, dig deep and find the wherewithal to “just keep swimming” (as our friend Dory from Disney’s “Finding Nemo” taught us). At certification day, there is understandably some waiting in line. In an “all volunteer” organization, it takes a village of caring and committed volunteers to make certification day happen. However, clients do have to spend some time waiting for the next station to open up so that they can be tested on those skills. While waiting, I people watch. I’m easily caught up in emotion and found myself getting choked up looking around at various teams performing like super heroes. Can these individuals FIGHT without a service dog at their sides? Yes. I have no doubt. However, having a service dog makes each and every day a little easier.

It’s more than the skilled tasks they do, y’all! Milo retrieves dozen of items I drop each day. He is my alarm clock. He opens and closes the dishwasher, refrigerator, and gets clothes out of the dryer for me. He braces when I stand from a sitting position. He walks along side me and is only a touch away. Yet, the biggest benefit Milo brings to my life is psychological and emotional strength. Can I fight alone? Yes.

But I don’t have to do so.

Milo is with me 24/7. If I’m having a bad balance day, I go to work anyway knowing he’s got my back. If I’m dreading a large meeting, knowing in advance I will have trouble hearing, he provides the courage I need to do what needs to be done. I consider myself an advocate and “assumption destroyer”. However, Milo makes me a super hero. I think service dog partners forget those “under the radar” strengths our service dogs provide for us. On annual certification days, I am often reminded. Observing these teams and the trainers who coach/love them, brings these hidden benefits into startling clarity for me. We can count on other caring human beings to help and support us as needed. However, it is only a service dog partner that can be there ALWAYS.

I want to leave you with the lyrics and original video of “Fight Song”. I also am not ashamed to acknowledge that I found my own fight song with the support of a service dog. For me… it made the difference.

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
Losing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believe
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me

ORIGINAL VIDEO

L. Denise Portis

© 2017 Personal Hearing Loss Journal

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

 

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