Comments from The Peanut Gallery

October 28, 2010 at 8:50 pm | Posted in Megan's Blogs, Ramblings | Leave a comment
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Megan and Barton Out and About.

Megan and Barton Out and About.

First of all, we want to thank all of our readers and those who commented on our last blog post. It’s a delight to have so many voices & perspectives that add to the conversation and dialogue. One great point that was brought up was how we deal with others who make comments- how do you respond to them?

I admit, that when I first encountered questions and assumptions about our intimate life or if we could have children, I had no idea what to say. Should I give an off-cuff humorous remark about sexuality and disabilities? Did they really want to know? Should I be polite and quiet, or not respond at all? For the most part, I realized that most people just didn’t know, and it became an opportunity to educate others about how those with disabilities can live healthy, normal lives. But not everyone wants to be an educator; they prefer more private lives, and there’s nothing wrong in keeping our lives private.

Barton has always used humor in responding to others, addressing their questions or assumptions. He’s found that humor eases someone who may be nervous or feel uncomfortable, and provides a lighter way to connect with someone who has questions. Most people know me as the quiet and calm one, but underneath, there’s a quirky sense of humor as well- so when you get Barton and I together, there’s bound to be a fun conversation.

Since Barton and I are both coaches, mentors, writers, speakers, we have opened up our lives to the public, for several reasons. We hope to give other inter-ability couples a sense that they are not the only ones out there and we can all come together in community to support each other in being successful in our lives. I’m so relieved to hear of other couples as they overcome the struggles in their lives, and it has given a sense of camaraderie that I don’t find anywhere else.

We hope to also give hope and inspiration to individuals, families and professional staff that their family member, friend, client can be involved in the community. “Out of the box” has become an overused expression, but I’m not sure I knew the true meaning of the phrase until I met Barton, and it’s completely changed the way I view the world.

Also, we hope to affect those in the community who may not only believe in the limitations of others, but of themselves as well. In our exchanges with others in the community, there is a moment when you can see someone burst through those limitations and assumptions- it is powerful to be a witness to see someone as they come to a different understanding.

As a writer, I’m interested not only in these connections, but in the context below the surface. In my listening to the man call out to me, “Well, you’re a healthy cripple,” what was underneath his chiding remark (whether he meant it intentionally or not)? How do we relate to one another, on all the intricate levels underneath? The past few weeks, I’ve been given the opportunity to see how I react in different situations, to uncover why I did or did not respond in a particular way and how that affects the community I was in.

So how do you respond to others in the community you come in contact with? It’s up to you, truly. Here are a few questions to consider:
• What does your personality call for?
• How much are you willing or unwilling to expose?
• What are your values, and is there a way to express those values to others in different ways?
• How can you be open to change yet not change yourself on someone else’s account?

No matter what, discover your voice, what you want to say and find a platform for where your voice can be heard!

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Offering the Space to Change

October 28, 2010 at 8:47 pm | Posted in Barton's Blogs, Ramblings | 1 Comment
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Over the past few days, Megan and I have had some interesting discussions, not only in our experience over the weekend, but also writing the blog post and looking at different angles of how we respond in different situation in public.

A while back I was asked by a group of young disability advocates how I dealt with people that don’t have enough patience to take the time to understand me.  My initial response was that I attempt to approach these situations with patience and openness in order to set an example for whoever the person is that I’m speaking with.  While this angle tends to work well for me, I realize that this is only one of an infinite number of possibilities.  The question that comes to mind most prominently when I contemplate this is, “what response would best honor the humanity of both people in this situation?”  

As people we all have the potential to step into a space of greater alignment and connection; but we also have the ability to withdraw from this same space and become trapped in our own conditioning.  If we are able to let go of our fears and engrained patterns of behavior we will find a place of expansiveness that in turn creates a profound sense of dignity for you and everyone that you come in contact with.  Finding this space is infinitely simple yet we continually forget how to contact it (trust me, I forget all the time!).  The initial contact can be made in feeling an exhale, a deep laugh, or even feeling the space around you.  When this happens, how does your being shift?  Do you feel more alive or present?  Do people respond to you differently?  

Keep making contact with this feeling and see what develops.

The Healthy Cripple

October 24, 2010 at 10:39 pm | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty, wheelchairs | 8 Comments
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Beware- Healthy Cripple Crossing.

Beware- Healthy Cripple Crossing.

This weekend- I was deemed a healthy cripple. Yesterday we were at the Flyleaf Poetry Reading and Crafts Showcase sponsored by the NC Poetry Society. For most of the event, I had our car parked across the street to allow more parking for customers. However, near the end, I moved the car back, and parking the accessible parking space to load Barton as well as all our stuff. A man was sitting in his parked car next to be, also in an accessible parking space. As I got out, he called out to me, “Well you look like a healthy cripple.”

You look like a healthy cripple. Fascinating. So I went to get Barton, and we ended up having a discussion out by the car about packing up and what we wanted to do for lunch, and I actually left Barton in the car while I packed the car up. I am sure Barton’s smile and bright eyes disturbed the man, so he actually ended up moving to another spot in the lot.

Now I know that accessible parking places in and of itself is a red hot topic which brings out the passion in most advocates, mainly because it’s taken so long to get and enforce parking for those with disabilities.

But let’s look at this man’s comment deeper, and there are two thoughts which I want to pull out a bit.

The first- you look like a healthy cripple. This was a statement about how I looked, on the outside. Should I have explained to him that it was just my husband who has a disability? Should I mention to him that I have chronic back pain? Or that I have low tone hearing loss which can cause balance issues or even worse that it could actually be MS but I refuse to be tested because my mother died from a reaction to pain medication for MS? I looked fine, but many types of disabilities don’t have anything to do with outward appearance at all. Many experiences don’t have outward exposure either, but can be just as debilitating. Let’s give each other a break once in a while. There are times when we need to push ourselves further than we ever could think we could go, and there are times when we need to nurture and take care of ourselves, give ourselves a perk every once in a while.

The second and possibly more potent- you look like a healthy cripple. The inference that people with disabilities are not supposed to look healthy. They are supposed to be unhealthy. It was one of the reasons why I wanted to bring Barton out and have a conversation with him where this man could overhear. Barton, whose muscles don’t work the way he would like them to, is extremely healthy. He doesn’t have cooties. If you could slow down and take the time, you would realize that Barton knows more than you or I. That he’s incredibly funny, and it’s not just his contagious smile. It’s everything underneath.

A long time ago, my martial arts sensei told me a story about Barton. Barton was in a sweat lodge, and there were two boys sitting next to him complaining. Barton bent over, and said, “You can lean on me.”

Breaking through the illusion that you have to be unhealthy to have a disability or be defined by the disability will take a long time to shift. As a society, we are just now coming around to the fact that those with disabilities have just as much, or more, to offer than those without.

How do we begin to shift the paradigm? To let go about our assumptions of how a person with a disability should be, should look or should behave.

At one time or another, we will all be healthy cripples.

No-Hole Repair Day

October 18, 2010 at 7:44 am | Posted in Around the House, Megan's Blogs, Ramblings, wheelchairs | 1 Comment
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Before: The office doorframe, knocked out of place.

Before: The office doorframe, knocked out of place.

 

This weekend, we took the plunge- we had a no-hole fix-it repair weekend. We have always laughed about the holes and dents in the drywall from Barton’s wheelchair. Every one has a story behind them and trust me we keep count of who makes each dent and hole in the hallway- a source of constant chiding, but it was time to repair the damage.

What a whirlwind of an afternoon, and we were so grateful to have help, as I couldn’t have done these projects alone. From taking the doorframe off to the office, spackling dents and dings in the hallway and bedroom, installing a new smoke alarm, yard work, installing a new blind, painting little items here and there, tacking up installation that had fallen under the house, we crossed off a number of repair items that had been on the list for quite a while.

Afterwards, as Barton and I crashed on the sofa, we felt as though we had just had an Extreme Makeover Day, and we had. These were projects that were on the list, but so many other priorities have taken precedence. Especially as we have been shifting the focus of our vision and mission, moving into new areas of work and exploring new possibilities. Yet, going back to take care of these items is necessary, and part not only of home-ownership, but of preventing future damage and cost.

After: A smooth entryway.

After: A smooth entryway.

 

So often, you hear the term work-life balance. How do you balance all of these aspects to our lives- work, family, home, volunteer/service, relaxation and rest? I haven’t quite figured it out yet, but I love how poet David Whyte talks about these aspects of our lives in conversation with one or another. It’s not either or, but rather how they overlap and interweave throughout our lives.

What I loved about our no-hole repair day was not that it was just marking items off a list, but that it brought pieces of our community together. We met new neighbors and spent a lot of time getting to know them, we laughed with other neighbors about inside stories they knew, and we reconnected with a family we had not seen in a while. A little boy and girl helped me carry brush out to a pile we made in the yard teaching them about helping others, and there were extra pairs of hands accomplishing items we could not have done alone.

What can we accomplish with the help of others? I’ve been known to have an, “I can do…” attitude, which on one hand is important to be determined and persevere, but on the other leaves out the potential to succeed as a communal effort. Community is important, and I’ve found that there are different communities for different parts of my life.

This ties directly in with finding a support system or network, which can be found in a variety of places- neighborhood, spiritual or religious based, organizationally or interest-based. It’s easy to say, “I’m so alone. No one has been here, done this, experienced this…” Yet, in this day, we all have experienced the changes due to volatile economic times, we all in one time of our lives or another will experience a loss or tragedy, as well as the joy of success.

What do you need to accomplish with an extra-pair of hands? Gather some friends together, tell them what you need and see what the possibilities are. You may be amazed at what can happen.

Playing Bodyguard

October 14, 2010 at 10:17 pm | Posted in Barton's Blogs, Uncategorized, wheelchairs, Wild Stories You Just Wouldn't Believe | 2 Comments
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What a night Saturday was! I certainly did not expect to be shifting from engaging in a casual conversation with someone at the bar to making sure he couldn’t do damage to anyone in the crowd, least of all himself. It just happened to work out that way for some reason.

Those who know us are aware that a village pub isn’t exactly what we would consider a typical hangout but since our friends were playing we thought it would be a nice change of pace. When we got there it was nearing 11 and a number of patrons had clearly already had their share to drink. After we got settled at the front of the bar, close to where the band was set up, a man close to me struck up a conversation.

At first I found this interesting as it was clear that despite his blood/alcohol level, there was some genuine interest in talking. After all, I suppose it’s not every day that you see two guys in wheelchairs roll into a bar. I was open to chatting and was pretty impressed at how well he understood me. As he began to talk more, it became apparent that he needed someone to listen and I was happy to do so since I saw this as a healthier option for him than pouring more alcohol on top of his troubles. Soon, however, it was obvious that things were beginning to shift.

As soon as he turned back to his buddies, he downed another beer before trying to reengage. This happened several times, and with each, he became increasingly dangerous to himself and those around him. I was done. It was clear that he had no interest in the opportunity I was offering. He began to stumble aimlessly trying to get others to dance with him. As he began knocking into others, including those on stage, I began creating distance between him and where we were sitting in order to protect Megan and our two friends. In a final attempt to engage us, he extended his hand over my head to ask Megan to dance. Realizing that Megan did not fully grasp what he was asking in the moment, I playfully interrupted the line he was extending by gently redirecting his arm, and intent, with a friendly nudge and glance.  

While this ended his attempts to engage with us directly, he was still way off kilter and on the verge of toppling over. From where we sat, however, our friends could not safely navigate to an exit and so my next task was to keep them from being trampled upon. By the end of the show, the guy’s friends had contained him somewhat. And that, combined with my capacity to serve as designated linebacker allowed us to open a safe path to the door for our friends.

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Training Practicality

October 14, 2010 at 4:40 pm | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty, wheelchairs | Leave a comment
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Barton and Megan training in Budo Taijutsu in Alabama.

Barton and Megan training in Budo Taijutsu in Alabama.

Last Saturday, Barton and I went out for a night on the town with dinner with our friends, Sloan & Wendy & we heard our friends of The Chris Hendricks Band play at a local bar. It was great to be out as Barton & I had been working really hard the week before & it’s nice to hang out.

As the night went on, a couple of people in the place had a bit too much to drink; they were pretty plastered. One guy kept coming up to me & Barton, which was fine because he was harmless, but he kept asking me to dance. It was funny the first time, not so much after that. I was sitting behind Barton & Barton became a barrier between the chaos on the sidelines & Sloan, Wendy and I. Barton’s concern was that this guy was going to fall back into our friends playing, but he also wanted to protect our little corner.

I’m not sure if the band members saw Barton block the guy’s hand as he reached over for me or if they saw his feet keeping him from coming any closer.

When I talk about Barton & I, how met training in martial arts, the first question that people have is, “How can Barton train in martial arts, in a wheelchair?”

I asked that question, too- on our first time trained together. And I do what everyone does the first time they train with Barton- pull the punch. What does that mean? It means I didn’t give Barton a realistic attack. If there’s not a realistic attack, Barton can’t give a realistic response. Finally, after chiding me, I gave a realistic punch, and he barred my arm & used some unexpected defense techniques.

While in the movies, martial arts can be big and showy, high kicks and complicated maneuvers may not be effective in a realistic situation. In training with Barton, it’s not so much what you do see and more of what you don’t see. Barton plays with angles, timing and distance in addition to all of the fun and pointy parts of his wheelchair. Whether he’s driving his motor wheelchair or in his manual one, it doesn’t matter.

There are down sides- hence our “No hole Fixer Up” Party on Sunday, where a few friends will help us repair the house from the holes in the walls from Barton’s wheelchair (Peace vs War Speeds). I can’t say all of the dents are Barton’s fault.

I’m privileged to have a man so willing to step in when needed to protect his family.
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