May 2015 – Hearing Elmo

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

©2015 Personal Hearing Loss Journal

We had a brief spat of rain this past week. When that happens I’m at risk for a “brief splat”. Folks? I think I’m more reliable than the Weather Channel. Seriously.

I’m like a human barometer. If it is going to rain, I know it. My vestibular system goes haywire, the tinnitus increases, and my world spins much faster than it normally does. So on a rainy day this past week, I was in class and took a very quick, very unwise turn from the whiteboard to face the class.

I actually have no idea why I didn’t fall. Call it luck. Maybe it was God. Perhaps I’m just THAT GOOD. However, just because I didn’t fall doesn’t mean I didn’t “bust a move”. As a matter of fact, it takes quite the “fancy footwork” to correct a near fall.

I stood there for a minute, with my arms stretched out to aid in my balance correction. I know my eyes were as wide as saucers. I actually heard my breath HITCH. (And if *I* heard it, it must have been VERY LOUD). I may not be able to move fast, but I think fast. I immediately thought, “Ok. How do I explain this? Do I cover with a counter-move?”

I pictured myself launching right into the MOONWALK, and prophesied I’d end up on my fanny.

I pictured myself STAYIN’ ALIVE, but this was long before THEIR time. Instead I decided to just lower my arms slowly and calmly say, “WHEW!”

A student in the front row nonchalantly said, “You should charge for that. Seriously. It’s that good”. Everyone laughed and the tension was broken. Professor Portis didn’t land on her face…

TODAY

How Do You Explain It Away?

If you have an invisible illness or disability that sometimes has your body doing things you wish it didn’t do, you’ve likely tried to think of ways to explain it to others when it happens.

I have a friend with a neurological disorder which causes her extremities to sometimes “twitch”. If she is fatigued and having a “bad day”, she may twitch very violently. I’ve learned to give her a little bit of space so that I do not accidentally get “hit”. I’ve known her awhile, however. Other folks who aren’t use to being around her, may experience a “near miss”. She cracks me up with her practiced come-backs.

“Duck!”

“You should see what I can do on a dance floor!”

These are coping mechanisms. Not everyone tries to laugh it off and poke fun at themselves. Some folks ignore it. Some folks just apologize (like it’s their fault? Wha…?) Some people don’t even try. They isolate themselves so that they aren’t put in a position to have to explain anything.

Kids. Expect it! They Are Curious!

Some of the best things ever said to me about my disabilities came out of the mouth of babes — children! I get so cracked up sometimes that it is all I can do to bend down to take the time to explain.

I’ll never forget when a kiddo pointed to Chloe in vest and asked, “Why does that dog have on a SADDLE?”

Sometimes OTHER people help me out. They help me explain to children what is going on. The Costco I go to on occasion know me now simply because folks start recognizing my service dog. One day I was in the freezer section and had to pass a more narrow opening to the aisle due to two cooking stations set up at the end. My balance wasn’t great that day, so I decided to just hang on to the cart and walk on through. The Costco deli representative had better ideas.

“Here, you’ve got to try this. It is really good!” She stuck a toothpick in a piece of meat that she had just fried up in her Wok. I shouldn’t have done it, but I reached for that toothpick.

Yup, I almost fell face first into the Wok. The lady grabbed my elbow and continued to extol the virtues of the seasoned meat.

A child nearby exclaimed with horror in their voice, “Dad! That lady almost fell in that cooker!”

The Costco worker, without missing a beat, said, “No worries. I caught her. We’re not frying up that kind of meat today”. Everyone laughed and numerous folks moved their carts clear so I could get through with giant cart and service dog in heel. I wasn’t the least bit embarrassed. I’m glad when people can tell that I am comfortable enough with being ME, that I don’t mind a little humorous dialogue.

When to Accept That There is No Way TO COVER

Humor doesn’t explain away everything. Laughing at yourself doesn’t always succeed at helping others feel more comfortable. Sometimes, all you can do is state the facts and move on.

I am sporting a big cut on my left thumb. It is healing and my nail is finally growing back. I acquired this injury as the result of cutting an apple with a paring knife on a day I wasn’t being extra cognizant of the fact that I have peripheral neuropathy. I was in class the day of the “big cut”. A student asked, after pointing to the huge bandage on my thumb, “what in the world happened to your thumb”? I explained how I got my “boo-boo” and the student stated the obvious. “Maybe you should get someone else to cut your apple!” I laughed and agreed, but have to tell you… I was peeved for a minute. I mean, I work SO HARD at being independent! I can’t even cut my own apple safely. I was still in a peeved mood when I went for my neurologist check up that afternoon. This was a re-check after the March 8th concussion. It was supposed to be a quick “in and out”.

But…

I was still peeved. After checking everything out, I told Dr. S. “Listen. I’ve had vestibular rehab. I use a service dog. I have my cane with me all the time. I walk with a helmet now on bad weather days. I never wear socks. I alert family members when I’m headed to the shower. I don’t drive at night. I drop things all the time, and cheerfully allow my retired dog to retrieve things if she’s there, or without shame, ask for assistance when she isn’t. You’ve got to help me! I can’t even cut an apple!” I exclaimed while gesturing towards my injured thumb.

I’m sure Dr. S. has heard exasperated – even desperate demands for an answer all too often. He sat there a minute digesting all I said. I have a feeling that after all the tests have been run and all efforts at rehabilitation are exhausted, his response is at times, “I’ve got nuthin’”

However, he got a lightbulb look on his face and turned to his computer. He typed something in and then turned the screen so that I could see it.

Ah. An apple slicer. I bought one at Target that very weekend.

If something is difficult for you and you need a “work around“, brain-storm with a doctor, friend, or family member. Perhaps there IS a way you can do – whatever it is you are having trouble doing – safely! I think asking for opinions help others understand that you really are striving to be independent, too.

SYTYCD (A television show called, “So You Think You Can Dance“),

if you use humor to help educate and advocate,

if you speak in plain terms to help others understand,

or if you get a bright idea from another source… simply celebrate the fact that you found a new AND SAFE way of doing things. A positive attitude goes a long way!

Denise Portis