December 2015 – Hearing Elmo

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

Coincidence, or Logical Comparison?

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

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

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

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

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

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

WHEW. They get it.

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

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

Include us

Befriend us

Hug us

Hire us

Believe in us

Advocate for us

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

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

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

Denise Portis

I grew up on a working farm. I’ve learned to add that “working” part, for after I moved to the “big city” I discovered that many people have what is called a “hobby farm”. I loved growing up on a farm, but can’t say I’ve ever considered it a HOBBY.

Growing up, I had a lot of responsibilities that included various kinds of farm work. Probably one of my least favorite chores was baling alfalfa; in part, because I was highly allergic! Sneeze at the wrong time, and the bale of alfalfa was suddenly on top of you, or worse… several piled up and rolling off the flatbed truck. I can’t tell you how many times my aggravated Daddy had to stop the truck, wait for my siblings and I to reload some scattered bales… all because I sneezed at the wrong time.

One of my favorite responsibilities was feeding the baby calves. We always had some wee calves that required bucket feeding. The picture shown is not my own calf, but it was the same kind of bucket. Now-a-days, buckets are plastic or are big “bottle-shaped thingie-majiggers”. We had these old-fashioned (but serviceable) metal buckets. In the beginning, I hated the chore. If the school bus comes at 7:40, that means all chores had to be done early. I’m talkin’ cock-a-doodle-doo early. I wasn’t a 5 o’clock in the morning kind of kid, and I’m still not that kind of adult.

We used powdered formula for the calves. Some were orphans, some were adopted from feed lots, and some were separated on purpose from mama if the calf was unlucky enough to be born to one of our milkers. The powdered formula smelled horrible. Ugh. We mixed it with hot, HOT water. In this way, by the time we carried the buckets to the barn, it was still warm for the calves. The calves drooled all over the place. Occasionally, they would head-butt the bucket (like they would their mama) and if you weren’t prepared (or had fallen asleep against the fence post), formula went everywhere and you started all over.

I’m not fastidious. I can stand dirt under my fingernails and getting my hands messy. However, returning to the house every morning covered in calf drool and formula, had me grumbling and complaining big time. My dad would let me whine and complain. He is a very quiet guy. When he did open his mouth to talk, we all practically stood in awe to see what he was going to say. It was always rather profound. One morning after listening to me bellyache, he said, “Denise, have you ever thought about how important you are to that calf?”

Well… Dad didn’t expect an answer. He had already walked off. I stood there digesting that though and I must have thought about it the rest of the day. I think I must have thought about it all the way up ’til I went to bed that night. The next morning, I awoke with a new attitude about those calves.

They needed me. They were pretty low on the “totem pole” as far as value on the farm. However, if I didn’t feed them, they were goners. For all intensive purposes, I was their mama. That morning I noticed as I walked out to the barn that the calves were all standing by the fence waiting… for ME. Likely, they always had! However, I was so busy grumblin’ I never noticed. As I set the buckets on the fence to give them one more good stir before turning them around for the hungry bovines, I noticed the calves were mooing softly and actually wagging their tails. They were expectant. They knew they needed me and that I could provide what they needed. I remember throwing my legs up and over the top rail so that I could sit and put my weight on the bucket guards to keep them from being butted to the ground. Now that my attitude was different I was seeing these calves in a whole new light. So… I started singing.

That’s right. I sang to the calves. Over the following eight or nine years, calves heard me bellowing out every 80’s tune I could think of and even some 70’s tunes as well. I sang, and I sang, and I sang. My entire outlook and attitude towards these calves had completely changed because I discovered they needed ME. At this point, you are probably wondering, nice story… but what exactly are you trying to say?

PIVOTAL MOMENTS

I truly believe that it was at that point I realized, even someone like me can make a difference. I was just a young farm girl. I had few aspirations. Yet, even *I* could make a difference – perhaps in the life of something rather lowly (and drooly), but I could still make a difference.

Do you know I believe some of my panic at 25-years-old, with the realization my issues were progressive, was that I was afraid I would no longer be able to make a difference? I’ve been forced to adapt to increasingly progressive “differently-abledness”. However, those early lessons made an impact. A “nobody”, farm girl could make a difference to a calf. Surely, a differently-abled woman could still find a way to make a difference!

Don’t get me wrong… I’m no super hero. As a matter of fact, I cringe a little when someone at work stops me and tells me “You inspire me!” I’m thinkin’, “Girl? I’m no inspiration. I’m ordinary. I’m just me. I didn’t sign up to only hear bionically, and learn to walk a semi-straight line with a vestibular disorder!” Everything about my life is rather ordinary. Sure, I have challenges, but the fact of the matter is, WE ALL DO.

I wake up each morning thinking, “I want to make a difference for ONE, today” (well… and I’m also singing 80’s tunes – some habits die hard). Perhaps this is what “trips up” folks who live with disability or chronic illness. They may have convinced themselves they have to do something rather profound to make a difference. You don’t. You can make a difference with something as ordinary as smiling. Kraut & Johnston (1979) wrote a fascinating article on research they did on unspoken messages and their impact. Smiling is actually an emotion-filled message that you send – perhaps to someone who needs that message.

Guinness (2003) wrote a book, “The Call”. I believe we each have strong, in-born desire to have a purpose. Sometimes, we mistakenly believe we are too broken, too busy, too much of a “farm girl” to have a purpose; to make a difference.

Wrong.

For some reason, folks think they have to impact the world to make a difference. Making a difference, MAKES A DIFFERENCE, even in the life of ONE. Aknin et al., (2013) recently completed some fascinating research pointing to how much good it does an individual to make a difference in the life of one person or in one way. There are physical, psychological, and emotional benefits to making a difference… also called prosocial spending (Aknin et al., 2013). You may feel you have limitations, but having the opportunity and capability of making a difference is not one of them.

This has completely changed my outlook on my own life. I can make a difference.

… and so can you.

I love the lyrics to this song (hey! I warned you earlier I’m an 80’s tunes kind of person). The Oak Ridge Boys got this one right:

Did I Make a Difference?

I’m caught up in the push and shove
The daily grind, burning time, spinning wheels
I wonder what I’m doing here
Day to day, year to year, standing still

Somewhere there’s a teacher with a heart that never quits
Staying after school to help some inner city kids
A mother who’s a volunteer, a soldier in the fight
I can’t help but ask myself when I lay down at night

Did I make a difference in somebody’s life?
What hurts did I heal? What wrongs did I right?
Did I raise my voice in defense of the truth?
Did I lend my hand to the destitute?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?

I’ve been working hard to make a living
And forgetting what true living is
Taking more than giving, something’s missing
Lord, how long can I go on like this?
There’s a lonely old man down the street
And I should be ashamed
I’ve never been to see him, I don’t even know his name
There’s kids without their supper in my own neighborhood
Will I look back someday and say that I did all I could?

When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference? Did I make a difference?

———–

Denise Portis

Aknin, L. B., Dunn, E. W., Whillans, A. V., Grant, A. M., & Norton, M. I. (2013). Making a difference matters: Impact unlocks the emotional benefits of prosocial spending. Journal of Economic Behavior & Organization 88, (1), 90-95.

Kraut, R. E., & Johnston, R. E. (1979). Social and emotional messages of smiling: An ethological approach. Journal Of Personality And Social Psychology, 37(9), 1539-1553. doi:10.1037/0022-3514.37.9.1539