AbleBodies

…Birthdays have a way of sneaking up on you, don’t they?

Not so much in the calendar sense—I’m a groundhog baby and knew year 26 was coming as soon as people started talking about winter and shadows—but more in the ways they sort of subtly impact your life.  I woke up on that Groundhog’s Sunday and checked for all the obvious signs of aging:  a lone grey hair, a suddenly arthritic finger, a strange urge to eat dinner at 4pm.  I found nothing.  I was in the clear.  Maybe I was finally maturing and year 26 would just be an easy transition with no catastrophic change!

And then I logged into my online dating app.

All was well at first; I skimmed through the gamers and the outdoorsmen and the creepy “HEY GIRL” messages like usual.  But then I stopped on a profile I actually liked.  He was educated, humorous, had hobbies…oh, wait; he was 31.  Scratch that.  Far too old for me.

It took me a full two minutes to realize that 31 was now comfortably within the 5-year window I’d set on my profile.  BECAUSE I AM OLD NOW.  I’M BOTH A VIABLE CANDIDATE FOR A 31-YEAR OLD AND I CAN NO LONGER DO MATH.

I’m beginning to think that birthdays come with cake so that you have an easy way to eat your feelings as your life passes by.  At least that’s what I did.

It’s a natural tendency, certainly, to enter into a new year of your life and take stock of what you have accomplished—and what you haven’t, particularly in comparison to others.  I’m now 26 and I see most of my friends are married.  Many of them have children.  Probably 90% of them have full-time jobs.  When I pictured myself at 26, I saw myself having those things as well.  But I don’t (yet, hopefully), and sometimes that can sting.  Everyone’s played the numbers game and felt they should have accomplished more, disability or not.

Where the difference comes in is other’s perceptions of those accomplishments in the face of disability.  By and large, we live in a binary world—our brains tend to want to sort things into neat categories:  black and white, straight and gay, good and bad.  This is actually a very helpful skill; in a world of constant change and choice, it often keeps us from losing our minds.  But it sometimes forces us into viewing things—and people—in a far too simplistic way.

In the case of people with disabilities, it’s been my experience that the able-bodied tend to put us into two camps:  Pretty Much Normal or BigFatGimp.  Pretty Much Normal people are those who seem to use a wheelchair more as an accessory than anything else.  They roll through the world in style, needing little to no help, inspiring and changing perceptions, all before dinnertime.  They’re cool and collected and they always look cute.  They toss their wheelchairs in their Mustangs and are on the move.

BigFatGimps, on the other hand, need help in every move they make.   They’re sick and they’re sad and they need your validation to give their lives purpose.  The fact that they live and breathe through each day is accomplishment enough; you don’t and wouldn’t expect them to be accomplished or active in the community or do anything other than grapple with the weight of their disability, day in and day out.  They make you uncomfortable, though you’d never admit it.

And so, around birthday time, I tend to get a lot of questions—surveys of my life, really—that kind of seem like feelers to decide which side I belong on:  “You teach now?” (Pretty Much Normal)  “Oh, part-time?” (BigFatGimp) “I would love to go to dinner!” (Pretty Much Normal) “…but we can’t go there, because they don’t have an accessible entrance?” (BigFatGimp). 

I wish that able-bodied people could see their faces when this process is happening, hear their tones.  Maybe I’m taking it personally, but I can see hope and disappointment flash in their eyes while they’re taking stock of my life.  When I fall into BigFatGimp a little too much, there’s always a hint of betrayal flashing behind their eyes:  I thought you were normal.  And the scary thing is, I think part of the difficulty in birthdays is that I have to stop myself from categorizing myself, too.  Still living with mom at 26:  BigFatGimp.  Students laughed at you when you dropped a book:  So Crippled That It Needs a New Category.

In those moments, the only thing I can really do is stop and breathe and remind myself that my life is a work in progress.  And in that, it’s not any different from anyone else’s.  My pieces might be coming together a little slower than the norm, but they’re still fitting, a little at a time. I can only hope that someday the puzzle will be completed, and that the overall picture will be a little prettier for the time it took. 

…In the meantime, there’s always cake.

- Holly - 

A Tale Of Two Presenters ...

Lucia says:

Working at a non-profit full-time, I get asked quite a bit to make presentations about the organization and disability related topics.  My first instinct is to say no.  Why?  I despise public speaking!  I know it’s probably a shock to some because I do it all the time!  Not by choice per say, but my job duties require me to teach workshops and train others.

I believe there is an art to speaking and keeping a groups attention.  I’m always thrilled when I get in that moment.  You can see the faces on the heads that were once nodding off; fingers have stopped texting, whispered conversations have stopped without giving the evil eye, and your lips are the only that are moving.    

I can talk to a group of teens about how to fill out a job application, business professionals about the dos and don’ts of disability etiquette, but when I talk about having a disability and how it affected my life, that is truly when I have captured the audience’s attention.

Recently, I was asked to speak at the Latin American’s United for Progress (LAUP) youth conference.  I could have taken any number of presentations I had done for classrooms and presented, but I wanted something fresh and to keep a group of teenagers attention.  I thought to do this I would need to ask for help and I knew exactly who that person would be – Roel.    

Roel says:

Lucia invited me to join her to conduct a presentation to discuss the choices we make that lead to our success. The talk was aimed at teenagers from schools all over West Michigan. Our theme was Success is a Choice.

We decided to keep it simple. No power point presentation or fancy gadgets. We wanted the students’ full attention on us. That may sound self-centered, but Lucia and I wanted students to know that success IS a choice and truly up to each individual.

In a nutshell, Lucia and I told students our respective stories. We are two people with disabilities. One of us was born with the disability and the other acquired it at age fifteen. Obstacles blocked our respective paths in our journey toward adulthood. Some obstacles included peers, teachers, actual physical objects, school, employers and life in general. For the most part, we held their attention. I even started the second session with an introduction full of gibberish. It sounded like I was speaking in a foreign language. I did get confused looks. But that’s OK. I got their attention.

Lucia says:

Presenting with someone else can be interesting, and Roel sure kept it lively.  We were able to share our stories in our own way.  I knew Roel’s story, but seeing him interact and hearing him talk about it to those teens was awesome!  Being comfortable with ourselves and vulnerable about our situations and backgrounds helped us really connect with our audience.  We had their attention for sure. 

The last part of the presentation we ended with giving them 3 steps they could actively work on now toward their own success.  These steps were ones that Roel and I had personally done, and continue to do.  I talked about the first two, which were setting real goals that you can accomplish and taking accountability for yourself and your actions.  Roel talked about the third one which was getting out of your comfort zone.      

Roel says:

Getting out of a comfort zone is difficult because we feel safe with who and what we know. Once we’re away from this environment we might begin to feel uneasy, nervous or full of anxiety. Our message to these kids was to aim outside the box. Reach for the stars to make dreams happen. That may mean leaving home and familiar surroundings to head to college. Most times the college or university isn’t located in the same town or city in which students live. Also, part of this message of getting out of the comfort zone pertains to expanding the ring of friends. This causes growth in individuals because people get to experience people of different races, cultures and ethnicities.

Lucia says:

After the presentations ended - we gave two - Roel and I were excited about what had taken place.  It was fun being able to share our stories together, and offer the young generation some advice that we learned through our experiences.  We treated ourselves to Wendy’s in celebration and joked that we needed to take our act on the road.

Not long after I dropped Roel off so he could teach a class, English this time, and I drove to West Ottawa High School to present about skills to a group of teens.  I hoped some of the magic from the morning presentations would rub off for the afternoon.  If not, I brought in reinforcement – candy! 

Roel says:

We wanted to plant  seeds in the minds of students attending the presentations. I know that one presentation won’t cause a great shift in thinking in a person, but if these students can start believing that they can be successful if they step out of that comfort zone then that’s all that matters.

I could have used a youth conference like the one LAUP holds every year. I preached getting out of a comfort zone but when I was a teenager that was the furthest thing from my mind. I was safe living in the ranch in South Texas where I grew up and lived until I was around thirty years old. At the time I was held back by many things, including my vision disability. I saw my disability as a crutch and a big obstacle. It wasn’t until I met my wife Dawn in the early 2000s that things changed and I slowly crawled out of that comfort zone. Eventually I left that comfort zone behind in Texas and moved up to Michigan, where the only family I had was Dawn’s. I had no friends here and no reference for anything and tolerance for snow (well, after this winter, maybe that intolerance is back!).

Part of growing up is stepping out of that comfort zone. Some people do it earlier in life, even as a teenager, while others wait awhile. I wish someone had talked to me about taking that leap and immersing myself in everything new. Well, better late than never.

- Lucia & Roel -  

A Stephen King Love Story

 

Wedding Day - July 27, 2002

Dear Stephen King,

I want to thank you for something. No, it’s not for writing tales that make the hair on my neck stand on end. And, no, not for the inspiration you provide for my own writing.  I want to thank you for introducing me to my wife, Dawn.

Back in 2000, after finishing college in December 1999, I started an online posting board about your work with the intention of making friends with fellow Stephen King fans. It worked. But in the process, I also fell in love with one of the regulars who started posting.

I had my regular posters on the board, who I’d gotten to know and we became good friends. These friends included Paula from West Virginia, Debra in North Carolina and Ardette from Maine, among others. We had great conversations about your books, films, and trivia and about life outside your world.  We exchanged photos, had online chats and even talked to some of those friends on the phone.

But there was this shy poster. I didn’t know the name of the person. The person went by kit-o. The person was intriguing. Her posts also were intriguing and well thought out. Eventually I found out the person’s name was Dawn. I wanted to get to know her better. Even then I was falling in love. I know it’s weird to say that because I only knew this woman by what she posted and the little information she provided.

It took me some time to ask for her e-mail address.  Then it took almost as long for Dawn to give me her e-mail. I was elated to have some other outlet to contact Dawn other than the online posting forum. I saw the possibilities as endless.

To cut a long story short, we finally got to email each other in early 2001. Instant messaging followed in March. Guess what day was our first online messaging chat? It was on her birthday night. I’d sent her an e-greeting the day before, which made me nervous. I didn’t want to seem too forward. You should have seen the time I took to choose an e-greeting before emailing it. Anyway, on her birthday night, I sent her an email asking her to get instant messenger. As I sent the email, she was already downloading the Yahoo program. Coincidence? I think not. We spent hours chatting online that first night. It was like chatting with a long, lost friend and we were catching up. It was quite an experience, one I still hold dear to my heart. It was unforgettable. The following night, a Saturday, we did the same thing, chatting all night.

On Sunday we chatted again during the afternoon. This time I slyly gave her my phone number, hoping maybe, just maybe, she’d give me hers. She did! Then I made a phone date for that Sunday night. You wouldn’t believe how nervous I was as I dialed the number. My fingers shook and my heart was thudding. Finally, the voice that I’d only imagined for eight months said, “Hello?” The barking of a dog (her sheltie Duffy) followed the sound of her voice.

We were on the phone for hours and hours. And she had to work the next day. Still, we couldn’t seem to get off the phone. It was as if we’d known each other for years and were picking up the conversation again.

Things sped up after that. We continued our phone conversations on a daily basis. Then in April she flew from Maryland to San Antonio. I’ll never forget the scent of her perfume as she opened the front door to the Riverwalk Inn. It was heavenly. She had a shy smile on her face and wore a pretty dress. We spent three days in San Antonio.

There was another visit on Memorial Day weekend. That turned out to be a pivotal visit. After those three days and some discussion, she made the decision to move to Texas.  She moved to Texas several months later. Now we were together. None of this long distance stuff.

To cut the story short again (sorry Steve, this can’t be like “IT” or “The Stand”), we got married on July 27, 2002. Where? Well, in San Antonio, of course, at The Little Church of La Villita. It was a quaint and intimate wedding. The way we wanted it.

After living in Texas for awhile, we moved to Holland, Michigan, where we are today. This is her hometown. A place of three-and-a-half seasons, beauty, and comfort. A place where we get to live and enjoy our lives together.

I don’t say this much, Steve, but I feel blessed to have met and married Dawn Permesang. Think about it. What are the chances that online, she’d pick my, MY, online posting forum? I’m sure there were countless ones out there. After all, you are prolific and one of the most popular storytellers of our time. Yet she chose my online board, the one with about 10 to 15 regular posters. I guess you’d say the chances of her ending up at my online posting board were in the millions against it.

Today it is eleven years of marriage. We have three kids and one cat. She’s a homemaker and I teach English as an adjunct instructor at a community college and write short stories in my spare time. We still read and reread your work and watch your movies. I just read Doctor Sleep and thought it was one of your best.

I’ve wanted to drop you a line about this for some time now, Steve. I want to thank you for playing an inadvertent but intricate role in helping me meet my wife, the intelligent woman with the beautiful, soft, brown eyes and the capacity for such warmth and love, the one with the tender smile. I love that gal.

Your Constant Reader,

Roel Garcia

"The greatest thing you'll ever learn is just to love and be loved in return."

What is love? Is it waking up next to a person and having a smile on your face because of the feelings between the two of you? Is it coming home from a tough day, or a simple day, and having your favorite meal already prepared for you? Is it driving together, without a care in the world, singing your favorite songs? Is it falling into the arms of your partner because there are times when the world can seem too much? Is it a simple, sweet kiss? Is it sitting in the same room, with nothing but silence, and feeling as though there is nothing better? Is it finishing sentences for each other? Love is all of these, and so much more. I feel confident saying this because I’ve been together with my partner, Luke, approaching 6 years.

 

At Artprize, Luke defined “freedom” as part of a hands-on entry. As he often does, he brought out so many emotions, with so few words, and put it on display for everyone to see.

If you want a dictionary definition of “love”, you can easily find it. Love isn’t simple, though. Love isn’t as easy as grabbing a dictionary and looking up a word. Love takes time, and is well worth the wait. Love isn’t just a word, it’s a feeling shared between two people, running deep within the skin of each individual. Love is an emotion which has no boundaries or rules, unless those involved choose to set them. This is one of the many wonderful aspects of love: there’s a fantastic sense of freedom involved. Don’t like rules? Then you don’t have to make them. Rebellious? Make rules, only so they can be broken.  A word of advice: learn to compromise with your partner. Doing so will allow each of you to learn even more about each other and see happiness in their eyes.

Define what love is to you and then go look for it. Or don’t. Sometimes when you aren’t looking for something, it’s right in front of your eyes; all you have to do is open them. I wasn’t looking for Luke when I found him, and he wasn’t looking for me when he found me. There was a moment in time where I couldn’t picture myself without him right next to me, and I had no choice but to capitalize on that exact moment. Life has a way of working out when you don’t necessarily believe it will. Before looking, or not looking, for love in others, be 100% sure you love yourself.

I don’t know everything about anything, but I do know a little bit about many things. One of those little bits I am very confident saying is this:  “The greatest thing you’ll ever learn is just to love and be loved in return.” I know this because Luke has taught me to love myself more, while also learning how to love others. I know that we both continue growing as individuals, and as one. That feeling is one which can only be defined by one word: love.

- Brandon - 

Transformation is easy to witness, and can be a positive experience.

 

So here I am with my cane. I've named her Gypsy. She and I will travel together, near and far. After my first encounter with her, when she bit me, Gypsy's been gentle.

Change. It’s inevitable in a person’s life. Sometimes change occurs slow and over the course of years, while at other times change happens quick. When change occurs in a quick burst, the transformation is easy to witness. And transformations can be a positive experience. Mine was.

Near the end of 2013, I underwent a change that affected who I am as a person and English instructor. I was introduced to some assistive technology to aid me in my everyday life and with my job. This technology came in the form of a cane and a laptop installed with the JAWS (Job Access With Speech) software that reads documents and online content on web sites.  

Before I begin to describe my transformation, let me explain about my vision disability. At age fifteen I was afflicted with severe vision loss. Eventually it was diagnosed as optic neuropathy. The culprit? Doctors speculated that a virus attacked my optic nerves and atrophied them. The condition was irreversible. This condition left me with limited central vision due to a blockage in the center of my vision.

However, there were gaps in this blocked area that allowed me to have some central vision in my right eye. This helped a little and I could do limited, slow reading and I was mobile. Though difficult and, at times, frustrating, I carried on without any assistive technology for twenty-eight years.

Why did I go so long without assistive technology? I’m not really sure. But my best guess is pride. I wanted to continue doing on my own. I wanted to be independent and say, “Look, despite my vision loss, I was able to do it!” In hindsight, that way of thinking hindered my independence and growth as a person.

This past year, I came to the realization that I needed help. I was tired physically and mentally of the slow process of grading students’ essays and other work. Grading essays took days when reading them on my own. After a session, I was spent. I began to think that there surely was an easier way to accomplish this task of grading essays.

In addition to wanting help for my job as a teacher, I began to notice that despite how freely I thought I maneuvered through Holland’s sidewalks, my mind was on high alert making sure nothing got in my way. Again, like trying to read essays on my own, I often came back from a walk mentally tired.

Change. It was coming in my life and little did I know how much it would impact me and transform me into a more independent person with a disability.

In November 2013 I started receiving cane training. I was introduced to a few canes. I chose one that seemed to fit me. I called the cane Gypsy, since she and I would do a lot of traveling together.

Over the course of the next few months, I underwent training with my cane. I was trained indoors and outdoors, in fair conditions and wet and snowy conditions. Soon, My cane helped quicken my pace as I walk. Now, no matter if I’m walking at night or while snow covers sidewalks, my cane acts like my eyes on the ground while I keep track of my surroundings. Life is easier with Gypsy.

Now, on top of making my traveling easier, my cane is part of who I am. My cane brings attention to me as a visually impaired individual, something that remained hidden from strangers and society for more than two decades. People now see the cane and take note that a person with a vision disability is approaching. In years past, I hid from my disability, never bringing attention to it. It was as if I were embarrassed by my disability. Now, because of my cane Gypsy, my disability is in the open and it is part of who I am.

Besides acquiring a cane for my vision disability, I also attained some software to help me with my grading of schoolwork. The JAWS software, installed in my laptop, reads any document or PDF. The reader voice is computer generated. I call the voice Fred.

In the previous three years as an adjunct English

Gypsy and I learning to travel through the snow covered sidewalks.

instructor at Grand Rapids Community College, I went through the same rigorous routine after collecting a batch of between twenty and twenty-five essays per class (I normally teach three classes per semester). I’d bring the essays home and hunker down, reading for days.

When I was done grading a batch of essays, my back hurt from hunching over, my eyes were irritated and I was drained. Not to mention, the vast time I spent away from my family, cooped up in a room grading.

When I received JAWS software and used it for the first time during the 2013 fall semester, life became so much easier. I’d gather a class’s worth of essays, collect them into a zip file and download them onto my laptop. Then I let Fred do the talking (reading) as I listened while he read the essays. With this software I was able to grade essays at a much quicker and efficient speed.

During that first semester using JAWS, again, my vision disability was upfront. Sure students know of my disability, but now every time I ask them to turn in an electronic copy of their essays, it’s a reminder that their instructor has a disability.

Change. It happens all the time. It’s inevitable, really. When it happens there may be a sense of uncertainty but if that change is for the positive, embrace it. Change involving assistive technology transformed me. I am now so much more open with my disability and feel I’ve gained independence in the process.

- Roel - 

One idea, five writers and a blog is born!

Okay so Able Bodies didn't happen that quickly, but it was an idea I had tucked away in the back of my mind for over a year. It was an idea tugging at me, and when I met the right people it became a reality.

I am only one of many who experience life with a disability. 

As a writer I like to share my experiences, and many times found myself writing about life with a disability. I'm always surprised at how people want to know the most mundane facts about my life. Honestly there is a lot more to me than just the disability, but many times my short stature, wheelchair and crutches are the draw at first. When I get the question - how did it happen - I fail at providing an epic, mind blowing or compelling story. Why? I was born with spina bifida, it happened within the first few weeks as I was forming, end of story.

Having a disability is all I've known. Using crutches and a wheelchair is second nature to me. I "walk" just in my own way. No big deal. I adapted, learned and was raised not to expect any special treatment. Yet it's REALLY hard to ignore the stares, comments and assumptions.  

Have you ever felt like the outsider wherever you go? Waiting to use the rest room until you get home because your wheelchair couldn't fit in a regular sized stall? Putting on your bathing suit, and when you go to the pool giggles and stares at the scars on your legs? Going to a networking event and everyone is standing while you sit, no one making eye contact with you because you're not at the right height. The thing is all of these happen, but it's not the disability that causes these things to happen. The circumstances are the cause because I am just a regular person who lives with a disability that happened before I was born.

 

Our first official gathering, Roel, me, Brandon, Elizabeth and Holly on Skype.

I am only one of many who experience life with a disability. A disability that happens at birth or is acquired through the years. One thing I wanted from this blog is for those outside of the disability perspective to understand that people with disabilities are people FIRST! Having a disability is not a curse, unbearable or sad beyond belief, but it is one facet to who we are and not the defining aspect of how our lives are or will be.

I have invited four incredibly awesome individuals to join me in this endeavour of bringing awareness about the disability experience. Each has their own story, each is a contributing member of our community and we all want to break the stereotypes about people with disabilities. Our disabilities made an appearance in our lives at some point.  We all had that moment of realization that we were viewed differently. We all had to come to terms with our disability.  We are open to sharing our lives with you.      

Keep in mind we are just people. We are flawed, funny and living ordinary lives through extraordinary circumstances.

Thank you for coming on this journey with us!  

- Lucia -