Living in a Not So Perfect World

June 26, 2009 at 3:35 pm | Posted in Ramblings, Speaking Engagements, The Nitty-Gritty | 1 Comment
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I wish I could say that all of our stories are filled with laughter of dented doors and wild puppy stories; after all, we could fill your ears all night long with them. But then we’d be looking through rose-colored glasses. Occasionally, we experience the heartache of pretty blatant discrimination (let’s just be frank and just call it what it is), especially from the professional community. How could there possibly be a community leader with a developmental disability?

Last year, Barton and I attended a session at a disability conference where a nationally known speaking organization talked about the ways in which their speaking group can be beneficial to people with disabilities. We visited a local group several times, with members that were both colleagues and local community leaders.

However, when we wanted to join, we hit a brick wall realizing that certain members were intimidated and concerned about Barton’s slurred speech, and they were stalling when we offered other ways in which those concerns could be accommodated. I could join, but Barton could not.

I was amazed not only by the blatant discrimination, but also by my reaction to it. I had looked up to several members of this organization, who are also prominent motivational speakers and people I personally had wanted to work with in other arenas. I was speechless at how angry and betrayed I felt, which I had to look at more closely. I had to separate the actions of a few members, which did not represent those attitudes of others.

Barton has dealt with discrimination in one way or another is whole life, and has learned to “just do it anyway,” no matter what. I am still in the process of learning how to move with ease through some of these experiences. While I was labeled one of the outcast kids in school growing up, I didn’t really experience blatant discrimination until I spent a semester in Australia.

In this particular situation, we did write a letter to the national office, not really expecting any response back but needing to call it out and voice what we had experienced. Since we have not received a response, we have blocked out any identifying information. Self Advocacy Letter  

Barton and Megan read poetry at an Open Mic Night.

Barton and Megan read poetry at an Open Mic Night.

Fortunately, Barton and I continue to speak together and individually at many types of events- meetings, conferences, community events, open mic nights, and readings, which are held both on a local and national level. We’re continually amazed to see how sharing our story offers the space for others to open their eyes, overcome challenges and for many, lead to a place of healing.

Barton and I are continually working on how we present together when we speak as a couple, which I guarantee isn’t taught in a speaking workshop.

And, you know, we’re okay with that.

If you’re interested in attending one of our speaking engagements or are interested in having us speak to your organization, please visit http://www.cuttersword.com/events.html.

 

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Life Insurance is Hazardous to Your Health, Megan’s Version

June 21, 2009 at 6:16 pm | Posted in Adoption, Ramblings, Wild Stories You Just Wouldn't Believe | Leave a comment
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I told this story the other day, and it’s just too funny to keep to ourselves. So a couple of years ago when we first started to call different adoption agencies, just to even inquire about their adoption process and requirements, one of the first questions we were asked was if we both had life insurance. We knew we needed to get all of our paperwork in order since adoption is a legalized process, so we began researching life insurance for both Barton and I. Our agent spent a long time researching the best options for us at the most economical fees.

Not only do you fill out the application, but a nurse also comes to your house to get a medical history, accurate height/weight, blood sample, etc. While the volunteers that do this are not nurse practitioners, they have been trained- for the standard family anyway. Barton and I are anything but standard.

So when the woman came over, she was overly concerned about Barton standing on the scale. “Is he okay?” she asked about four times in a row in a trilly patronizing voice. You know me- I just threw Barton up on the scale, so she could read the numbers off.

Now you have to realize that Barton’s old chair had three speeds- walking, running and blast through the house protect the family from bad guys speed. (His new one has two speeds of which he named Peace & Combat).

The nurse kneeled down to read the scale and rested her hand on Barton’s wheelchair. As she stood up, the volunteer, not only flipped the switch to turn on the chair, but changed the speed to torpedo and pushed the joystick forward, blasting the chair into the refrigerator.
Now Barton did let out a yell, of which she thought he was hurt, but it was actually to stop her because he was concerned she would move it again, over us, and we’d all be in trouble. Only the refrigerator received a slight bruise, and believe it or not, nothing even fell off the top.

I have never seen anyone get so red in the face, apologize so many times and run out of our house so fast- it was definitely a Shrek moment.

Bless her little heart, she called two or three times just to make sure we were okay, and also to tell us we could go to a general practitioner for the rest of Barton’s exam. Now I did feel little bad because we had a good laugh over it, many times over.

If this is the beginning of our journey, the rest will definitely be an adventure.

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Life Insurance is Hazardous to Your Health, Barton’s Version

June 21, 2009 at 6:13 pm | Posted in Adoption, Ramblings, Wild Stories You Just Wouldn't Believe | Leave a comment
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Pardon me, for having what some might consider high expectations, however, when we were told that we were going to receive from a nurse to do our medical history and some basic health tests to apply for life insurance, I assumed that this “nurse” would be a well-qualified medical professional. After all, all of the nursing programs I had ever heard of gave people a minimum of Masters or an equivalent there of. How was I to know that the nurse that we were to receive a visit from was the medical equivalent of a rental cop.

I assumed for most of her visit that she had much more experience, and therefore understanding then in fact was the case. When we sat down to the medical history, everything seemed quite normal. She even understood me without Megan’s interpretation for most of the conversation. This only fermented my belief in her professionalism. The first time, however, that something was amiss was when, after pulling out the scale and asking the best way to take my height and weight. She gave Megan a questioning look, almost as though there was some disbelief that I could safely get out of my chair.

As I stood up on the scale, I thought I had said to be careful of the controls or perhaps I didn’t, making an assumption that a nurse would have been around wheelchairs before and thus would know that the joystick makes the contraption move. Was this too bold of an assumption? I regret to say that it was, and no sooner than she bent down to read the scale, did my wheelchair go careening full speed ahead into the refrigerator as she attempted to use the joystick to stabilize herself. As Megan said, unsure that she was aware of the potential to severely hurt herself, I let out a full body yell trying to stop her in her tracks, which only rattled her more.

Once we were recollected, and I was back in my chair, I knew that she had yet to draw my blood. As she began to pack the files of records, I assumed that she was getting ready to take the blood samples, so I suggested the best way for her to do this. But this only got a blank stare.

A couple seconds later, and she registered what I had said and looked at me like I was nuts. And when her shock wore off, she was getting frantic and said, “I have to go” about five times in twenty seconds. She threw her bag over her shoulders and tore frantically through the front door never to be seen by us again.

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Adoption Talk

June 14, 2009 at 8:21 pm | Posted in Adoption | Leave a comment
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Megan Playing in Cambridge.

Megan Playing in Cambridge.

When we were in Alabama, we started talking with a relative about our wishes to adopt, and this was the first conversation I had had where I wasn’t either embarrassed or felt like we had to justify ourselves. Adopting a baby is miraculous as having a baby biologically. Since then, we have been more open about adoption and bringing our community into the excitement of the adoption process, which can be quite a long process.

 

When my friends and co-workers first met Barton, they naturally assumed we couldn’t have children or be intimate (we’ll write a blog about those questions later). When we first started talking about adoption, many people questioned how we would manage and were very discouraging. For a long time, I believed them; shutting out the visions and dreams we had as a growing family. I see Barton just as excited as I am, and that makes me know that we must trust and follow our dreams no matter what others say.

We had to take a look at the support systems we were missing and figure out how to become connected with our local community, as we will need to use more local businesses and organizations to help us raise a child into an adult.

We are brainstorming about some local community fundraising events over the next year, so stay tuned as we invite our community into our adoption process!

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Adopting and Loving It

June 14, 2009 at 8:18 pm | Posted in Adoption | Leave a comment
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Barton Playing with Family at Adam's Wedding.

Barton Playing with Family at Adam's Wedding.

When Megan and I first talked about having children, I never really expected a pregnancy that would last anywhere between one and five years, but increasingly, this is how I am beginning to look at decision to adopt. By looking at it as though we are in the early stages of a pregnancy, there is a greater sense that the process has already begun and that we are not simply waiting for the right time to adopt. It also creates a sense of inevitability, which greatly increases my excitement level. I can’t wait to be a dad, and while I know that this adventure will get much more exciting it’s important to me to enjoy the simple beginnings of the journey and no overlook where we are now because of my excitement about what the future will hold.

As Megan said, our community needs to be an integral component, not only during the adoption process but as we raise our child into their adulthood. The possibilities that I see before us for getting involved in our community and involving the community in the adoption and our child’s life are innumerable and I would like to invite you to join us as we discuss many of these possibilities over the coming months.

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Catching Up With the Wheels

June 10, 2009 at 9:21 am | Posted in Around the House, Ramblings, wheelchairs | Leave a comment
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Most people see me sitting on Barton’s lap as we zip through our neighborhood as we’re headed off to a meeting, dinner or just to walk the dogs. However, I actually have been walking or running beside Barton lately.

Since we’ve gotten back from Alabama, Barton and I have been carving out more time for exercise and personal time. We’re so busy with so many different types of projects going on at one time, it’s easy to let time slip away- I’m too busy. And indeed, it’s a challenge to find time during the day to get everything accomplished for the day or week.

The last week, it’s been so wonderful to walk with Barton during the day. Usually, he takes Bear and I walk Basho behind them. Barton’s wheelchair can go much faster than I can walk or run, so he will do circles in the street until I catch up. It’s also a great opportunity to work on dog training. Basho wants to be up in the pack, always trying to 1-up Bear, so I work with him on heel and sit on our walk. I’m working up to running the whole route, but I’m not quite up there yet.

In addition, it’s great for me. I’ll work on either staying with Barton or he’ll get right behind me on my heels pushing me to go faster.  

On the weekends, Barton will get on the floor working on his own exercises or standing or walking. He has a special walker, and on a nice day, we’ll pull it out onto the back porch.  

Barton and I spend a lot of time together since we work together owning our own business. We definitely have different modes- work mode, relax mode and it’s been wonderful to spend this time with Barton getting off of the computers, outside walking, enjoying each day.

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Audio- Barton and Megan Speak at The International Conference on Self Determination

June 1, 2009 at 12:24 am | Posted in Ramblings, Speaking Engagements | Leave a comment
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Barton and Megan in a more graceful moment posing for a picture.

Barton and Megan in a more graceful moment posing for a picture.

We’ve written a blog about speaking at the International Conference on Self Determination on May 3, 2009 in Winston Salem, NC. We had hoped to include the video of our speaking segment as well, but alas, it is not to be, not yet anyway. Through a barrage of technological disasters, we decided to refrain from showing you our pitiful video, upside down, mind you. To read our full explanation of technological turbulence, see our additional blogs below. Instead, we bring to you an unedited audio file of our segment as panelists. Please note that this panel discussion is very informal and lighthearted. 

 

International Conference on Self Determination

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Adventures in Technology, One Step at a Time

June 1, 2009 at 12:17 am | Posted in Ramblings, Speaking Engagements | Leave a comment
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Three months ago, we bought a digital video camera in the hopes that we could produce some videos for this blog. We have all these magnificent ideas on how we would to like to show all of you snippets of our lives. Amusing vignettes from various situations that only Megan and I can get ourselves into.

When Megan brought the camera home, we were both bursting with excitement about the potential of what this would offer. But because of the backlog of work and other projects, we found ourselves walking past the camera, still in its packaging on the kitchen table for the next three weeks thinking about how we really need to make time to open it and begin our long list of playful experiments.

When we finally did open it, at 11:58pm two nights before the conference in Winston-Salem, it became quickly obvious that our timing still left much to be desired. When I noticed the first grumblings of imitation as Megan struggled to fight her way through the overcomplicated packaging, I should have proposed that a good night’s rest would have simplified this endeavor a hundred-fold, yet, understanding the sense of urgency about the need to understand this new technology before the quickly approaching conference, we were both too tired to fool with it. After several aborted attempts, we did somehow manage to get the camera operational, minutes before our presentation at the conference.

But alas, when we returned home, the battery died, and there was no charger in the package to be found. We spent several more weeks attempting to figure out how this supposedly rechargeable gadget was recharged because of course this one bit of vital information was never covered in the instruction manual. I returned to Best Buy to buy a new charger, and after probing the aisle for the correct one, I learned from a member of the Geek Squad that is supposed to be charged through one’s computer.

Wonderful! It has been several more weeks, and we finally made the time to figure out the installation for one of our computers (we are still trying to figure out how to install software a Mac).

When we finally could view our attempts at recording, we were amazed to discover how clearly Megan and I came through on camera, now we just need to figure out how to record ourselves the right side up!

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Techno-Challenged

June 1, 2009 at 12:13 am | Posted in Ramblings, Speaking Engagements | Leave a comment
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While I have inherited my family’s creative genes, I obviously did not inherit their sense of technology or engineering.

Several years back when we received Barton’s walker, it arrived in a box of pieces with directions. It took me all afternoon to organize all the pieces and read the directions to figure out the first step for the assembly of this array of red and silver metal pieces. A while later, Barton had thrown out the directions and was disregarding the need to use all the parts. I had come to trust Barton’s sense of hardware and how pieces fit together, but technology is a whole different story.

Yes, Barton and I had great intentions of starting our video blog right away. Have you ever had one of those Duh! moments? We’ve had many over the last few weeks.

Focusing on writing projects and family travels, we had let the video camera project slide to the last place on the list of things to do. And I admit, computer/technology has always intimidated me because I have spent full days getting nowhere with installing and reinstalling software, crashing computers and technological turmoil.

So when we arrived at the conference having barely touched the video at all, I thought- how hard it could be? We’ll just see what happens. I spent twenty minutes trying to figure out how to attach it to a tripod, and ended up pulling tape out of Barton’s briefcase.

I fully admit that I used blue painters tape to attach the video camera to the tripod because I couldn’t figure out how to screw it into the attachment. (Duh! I felt so stupid when I saw the little hole for the tripod attachment a week later) In the middle of our speaking segment, Barton and I made eye contact as we noticed an edge of the painters tape peeling off, and we both fully expecting to see the camera drop down to its demise.

When we were able to open the video file on Barton’s computer, we soon realized that while the video did come out, we still have a lot to learn.

So be patient. A new video is on the way—as soon as we find the record button!

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