Tags: Barton Cutter, disability, disability and love, disability and marriage, disability and relationships, love story, Megan Cutter, Poetry, Speaking Engagements, Work, writing
This past weekend, Barton and I traveled to Atlanta, GA where I spoke at the Annual Writing and Wellness Connections Conference. I was excited to be with other writers who practiced and facilitated writing specifically for health, healing and wellness. We enjoyed a night out with family and drove back early Sunday morning just in time to help set-up for the Annual North Raleigh Author Showcase, where we facilitated the Open Mic section of the event.
We are lucky to be in an area where there are so many writing networks and events, supporting the literary community and finding an opportunity to give other writers a voice. There’s not a week that goes by where we aren’t reading at an open mic, facilitating a workshop, working on a story or attending writer’s meeting.
Barton has dipped back into writing poetry, while I enjoy writing poetry and longer non-fiction pieces as well. When we first met, Barton and I would email poetry and short stories back and forth as a part of our courting. Because of the time difference between Alabama and Arizona, I would receive e-mail with a poem in the morning and in the evening. Little did I know that Barton would spend an hour or more writing each email because he uses a head pointer, technology assistive device, to type.
Last year, we traveled to London and Scotland to attend a family wedding, Barton and I attended A MidSummer Night’s Dream at The Globe Theatre. We were right up against the stage, groundlings, and it was so incredible to see the best actors and actresses in theatre, with natural lighting, drawing the audience in. We could have reached out & touched them!
The day before, we just had a few hours to ourselves, and we literally raced up cobble streets to get to The British Library to see the original works of some of the greatest literary writers in Europe including Shakespeare’s first manuscripts, pages from Leonardo Divinci’s Notebooks, letters from Jane Austin, drawings from Galileo and Isaac Newton, Captain Cook’s Diary, the Guttenberg Bible, Dante’s Divine Comedy- the list went on and on. From Barton’s view, he was able to see printed text and designs not only from above, but from the side view, inside the pages, as well. There was no one else that could have shared the delight and joy of looking at these delicate treasures.
While we still write poems for each other, we find we are now united in bringing a voice and opportunities for others to express themselves, to tell their own stories. This November, we’ll be completing Ink In the Wheels: Stories to Make Love Roll, to be published in 2010, and we are excited to be telling our story, inspiring others to live and love.
Tags: Barton Cutter, daily living, disability, personal assistants, personal care assistants
Yesterday, as Megan said in her post, we had to let go of my morning help. While on one hand this was extremely difficult for me as we had been without help in the mornings for over a year, it became apparent that there was a clear disconnection between my needs and her understanding of this situation.
As a person with a disability, I have a strong conviction that I was put here in this form to help teach. Moreover in situations where I require the support of others, I expect that at a very fundamental level that they will enhance, in one way or another, the relationship or task at hand. Much of what I attempt to do, in every interaction, is to provide an example of inspiration despite any physical limitations. In my own experience, this comes from a strong determination to do what I believe to be right in any given circumstance. Often this involves great patience, deep faith, and the ability to act on the need of others at that time. Most of the time I have found that people respond favorably with a willingness to learn and grow from our encounter. Yet in this particular situation this was not the case.
While I do rely on the support of others to perform certain physical functions, this in no way lessens who I am as a human being or as a man. So what happened when someone who is supposed to support me does not view me as a whole and capable human being? I understand that because of her training as a nurse she had a very clear understanding of what was required to get the job done. However, as often happens in nursing homes or other atmospheres where human dignity is compromised, there was, from our perspective, a resistance to acknowledging that I was capable of asking for what I needed in the way that was most appropriate to my situation.
I found that in this situation I gained a unique perspective on what happens to people living in nursing homes and institutions who lose their passion for life. I found that after several times of asking for things in the way I needed them done I soon quit asking as I realized that my attempts were nothing more than wasted breath. This lack of respect began to impact the way I viewed my decision making ability. At the same time she continually placed Megan in the position of sole decision maker which over time began to erode the balance in our relationship.
While both Megan and I had attempted to address the situation with her, both as a couple and individually, our attempts did not prove helpful in changing the circumstances. As you might guess, the emerging patterns and behavior that I noticed in myself as well as in my relationship to my family were in drastic opposition to the way I choose to live my life.
It was for this reason and this reason alone that Megan and I chose to let her go. Interestingly in the past 36 hours or so, Megan and I have felt more aligned than we have in months and it has felt incredible.
Tags: daily living, disability and marriage, disability and relationships, disability self advocacy, household chores, Megan Cutter, personal assistants, personal care assistants, self advocacy
So today was not a fun day. We had to have a discussion with Barton’s morning personal care assistant, and in the end, we parted ways. It’s a bittersweet decision because we had worked so hard to get morning help to begin with, but we found that some underlying issues to be too detrimental to our household to continue.
Since being with Barton, we have only had to let go of help maybe two times. The first was a little more light-hearted since we had hired a student from the University who couldn’t get out of bed until 11am in the morning. The final straw was the beans incident. In a condensed version, I came home to a sink brimming with black murky water and the overpowering smell of Draino. A few days earlier, he had made Barton not one helping of black beans, but the whole bag of black beans. Yes, it was my mistake to be running late for lunch, leaving the container of beans on the counter. Apparently, Barton’s assistant dumped the entire pound of black beans into the garbage disposal. Now, what do you think happens to beans and water in a drainpipe? Just a note, if you try this at home, we are not responsible for the repair to your own drainpipes. Then, to “fix” the clogged pipes, he poured a whole bottle of Draino in the sink, and I’m wondering if it was just for spite, he turned the dishwasher on before he left!
Today’s discussion was a bit more on the serious, and we realized there were some subtle underlying issues that began to create a rift. We had finally found someone who had been in the field for a long time, and was experienced in a hospital, group home and residential home settings. We walked through the normal questions and a modeled the routine of the day. She was on one train of thought, with a specific type of care for Barton, usually working with someone that has a care provider.
But how do you integrate that work into the household that includes both of us, especially when we are working to break down the notion that I am Barton’s care provider? On the first day, Barton was so excited because he wanted to make me breakfast, but was told she was there only to take care of him. How could he communicate that there were things he wanted to do to take care of the household or me, as his wife, but needed some extra assistance in doing so? While we didn’t specifically address the times when Barton would want to include helping me with the household chores, we found the personal care assistant to be inflexible at even the smallest request. Barton tried to explain that I was his wife, not his mother or caretaker, and while the acknowledgement was there, the action didn’t really change.
Not only that, but Barton was feeling more and more like he was losing his voice about how he wanted things done, and that frustrated him because we were in our house. He likes is showers short in a particular way, and like most guys, hate it when other people dote on him. However, his assistant had a particular way as well, and they didn’t quite jive. At the same time, my best writing comes out in the morning, but getting interrupted to get this or that, I was quickly losing focus. I almost felt like I needed to leave our house just to get one thing accomplished. And we didn’t realize how we missed eating breakfast together- it was an important part of starting off the day.
Slowly, I noticed Barton was getting irritated and I was getting frustrated, and pretty soon, the rift was large enough for us to see. I am sure that from a personal care assistant’s perspective, it’s difficult to work with a married couple because the lines blur between working for the individual and working for the couple.
There aren’t any simple answers. Only the ones that come with trial and error, experience, communication, learning, and we’re still just rolling along in that process!
Tags: disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, Megan Cutter, Speaking Engagements, vision, Work
This past weekend, we’ve been at Coach Training Institute (CTI) Fundamentals, a workshop to learn, play with and practice personal and business coaching. We found out about CTI through our own personal coach, Phil Okrend with Stepping Stones Coaching, and through the course of the year, Barton found that coaching and mentoring is a part of what he does naturally, and wanted to explore expanding upon his skills and tools, integrating coaching more fully into his work.
When we first called to register and asked questions about if it would be all right if I came as Barton’s assistant, we actually could feel the fear through the phone lines. It was clear no one had asked the question before. And the administrator was clearly questioning. Could someone with a disability be a life coach? From this individual’s doubt, we then actually began to question if it was the right place and the right path. We were encouraged to sign up for the first class, but to wait to see if it was the right fit before registering for further workshops. I can’t tell you how thankful I am that we persevered through that process- this training was clearly where Barton needed to be.
Throughout the weekend, I saw the excitement and inspiration return to Barton’s eyes. He was on fire. He had found this space that encouraged and inspired him, pushed him further into new areas, redefining and introduced him to new skills, and a foundation and framework to work within. As one of the instructors said, he had come home.
The first day, I translated quite a bit, especially when Barton spoke within the large group or one-on-one practice sessions because it was difficult to hear with background noise. Slowly over the course of the weekend, I backed off more and more, and there was a more direct connection. By Sunday, I was able to fully let go, stepping out for the majority of the day.
What was so interesting was that I was working on my own stuff throughout the weekend. For example, I am on Barton’s line of thought so much, I tend to finish his sentences, which can be cute until I overstep my bounds and not let Barton finish talking (I can do this quite a bit). During one of the practice sessions, I could feel the energy rise to my throat and get stuck there, because I wanted to speak for Barton. I began to breathe, allowing the energy to come back down, and allow myself to be guided by Barton telling me when I needed to translate and when I needed to back off. And Sunday morning when I was working on a project in the hotel room, I also had to let go of the thoughts running through my head- will people understand Barton? Do I need to be there? Of course, he’s fine- he’s Barton! I don’t need to be there. There was so much freedom in fully letting go, and I know this was true for Barton as well.
What a privilege it was to be a part of this weekend, and I’m excited to see where things will go, what will be ignited from this process.