A Whirlwind of Words
October 28, 2009 at 3:39 pm | In Megan's Blogs, Our Love Story, Poetry, Speaking Engagements, Work | 1 CommentTags: 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.
Barton and Megan at The Globe Theatre.
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.
//
When the support isn’t supportive
October 14, 2009 at 8:27 pm | In Uncategorized | Leave a CommentTags: 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.
var addthis_pub=”mcutter9″;
When Help Just isn’t Working: Letting Go Our Personal Care Assistant
October 13, 2009 at 8:44 pm | In Around the House, Ramblings, The Nitty-Gritty | Leave a CommentTags: daily living, disability and marriage, disability and relationships, disability self advocacy, household chores, Megan Cutter, personal assistants, personal care assistants, self advocacy
Barton and Megan in the gardens at Cambridge, UK.
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!
//
Rediscovering the Fire
October 4, 2009 at 6:41 pm | In Speaking Engagements, Work | Leave a CommentTags: 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.
var addthis_pub=”mcutter9″;
Conversations With my Father
September 28, 2009 at 11:22 am | In Our Love Story, Ramblings | Leave a CommentMy father came up to Raleigh for a visit this weekend, and you might wonder, what’s so important about that? The relationship with my father has changed significantly over the past few years, though because of limiting travel over the last few years, we haven’t seen each other as much.
I remember being so nervous about what my father would think of Barton. Of course Barton and I had to do things backwards- we didn’t mean to, but neither one of us really mentioned the other one of us to our families. So on Thanksgiving Day in 2003, when we called our families to tell them we were engaged, all of our parents asked, “To Who?”
I had just been through several years of trauma, from both the break up of an engagement to a so-called high-school sweetheart (thank God I didn’t get married then!) and my mother’s death. Needless to say, my father was a bit shocked.
The first time my father and Barton met was up in Washington DC at a martial arts training seminar. Barton wanted to do the respectable thing and asked him for our blessing, but my father didn’t know Barton, and so he told Barton he couldn’t support us, though he knew we would do what we wanted. We had a lot of catching up to do. I remember a conversation with my father and stepmother about trying to explain how Barton and I were planning on getting married. What’s funny is that both Barton and I have said if we ever have a daughter and she does that, her fiancé might face more than just a few questions.
My father was obviously concerned that I would become Barton’s caretaker, and it was at a cousin’s wedding that he was able to see us in a more intimate setting. Since then, we’ve shown how in taking steps and risks that we have, like moving to North Carolina, it has enabled us to be in the position we need to sustain and take care of our family.
Not only that, but last year I traveled down to Atlanta, dad and I had a wonderful discussion healing many of the past hurts, the effects of my mother and father’s divorce when I was three & the aftermath of switching houses nearly every day. My father was able to see how much my life has changed (for the better), and I was able to see his presence in my life.
Before my father left on this Sunday, Barton was asking questions about how dad set up his private psychology practice- scheduling, building the practice, best practice questions because Barton has found that he would like to be able to coach and mentor youth and their families in addition to his current work.
What a wonderful dialogue to have, and I realized there was quite a bit I didn’t know about how my father, how he set up his practice and work in his life that I wasn’t able to be open to or hear before. Not only that, but my father really acknowledged the work I was doing in addition to giving some advice to Barton as well. What an amazing gift this weekend!
//
Speaking In the West Virginia Hills
September 16, 2009 at 11:08 pm | In Speaking Engagements | Leave a CommentTags: Barton Cutter, disability, disability and love, disability and marriage, disability and relationships, self advocacy, Speaking Engagements
Last week Megan and I had the opportunity to speak at the People First conference in West Virginia. It was a wonderful experience. The conference, this year, focused on building and maintaining healthy relationships and we were asked to present as one of the keynotes in addition to leading two breakout sessions. It was a rich experience for both of us.
We spent most of our larger presentation discussing how we met and using our story to encourage those in the audience to explore and develop their interests as a way to build relationships. One point which slipped my mind during our talk is that by connecting with people around a common interest, people are less likely to react based on preconceived notions and stereotypes if they know that there is a mutually shared interest.
Our breakout sessions got a bit more nitty-gritty as we talked about our lives as a married couple, the joys and challenges that we face from day to day and ways we’ve learned to move through and around those obstacles. We were fortunate enough to have lots of audience participation in both breakout sessions which made for lots of wonderful dialogue and questions.
As usual, our work didn’t end with the closing of our sessions. The second half of the conference focused on the risks involved in inappropriate relationships. Though much of the second keynote aimed at educating people about abuse toward people with disabilities, Megan and I had the opportunity to show those in attendance that there is an alternative to being a victim. This also opened the door for us to talk about the self-defense program we teach for people with disabilities. Perhaps next year we’ll have the opportunity to present on self protection and empowerment.
All in all, it was a wonderful three days and I hope we get the chance to do it again next year.
//
The Power of Poetry
September 2, 2009 at 2:46 pm | In Our Love Story, Poetry | 2 CommentsTags: Barton Cutter, disability, disability and love, disability and marriage, disability and relationships, Megan Cutter, Poetry, vision, Work, writing
When Barton and I met, I was living in Alabama while Barton was in Tucson, Arizona. For over six months, we would email poetry back and forth to each other, and because of the time zone, I would end up with two emails a day, one when I woke up in the morning, and one before I went to sleep in the evening. Poetry and flowers, no wonder I fell in love!
For our special days we celebrate together, we will write poetry to each other. Poetry always brings us back to center. There are times when we’ve dropped off, not writing poetry for a while because we are busy with other marketing projects. Let’s face it- it’s hard to write a poem on the computer when you’ve been on the computer all day. Or want to break free, writing outside, but are called back inside the office because other projects are due.
This last weekend, we traveled to Randolph, New Hampshire, and we had a moment to pull out my old trusty notebook and pen, drafting a poem. We sat on the back porch, overlooking the White Mountain Range, writing and rewriting the poem, Barton tweaking it ever so slightly each time.
I was fascinated with the space between words, the pace at which we wrote, and how each revision shaped and formed the poem into a new being each time.
Barton and I have been reading at local Open Mic readings in the Triangle area, facilitated by myself and Alice Osborn, another locally published author. Each time, we play around with how to read. I will go up with Barton and hold the poem for him to read. When we first started reading at opem mics, I would translate every word afterwards. Now, Barton will ask me not to translate, and we will offer to the audience that they may read his poem after the open mic if they do not understand. While someone asked us to have printed copies to read along with Barton, we noticed that people won’t listen to Barton, missing the connection between poet and listener. Each time, we experiment with something different.
It’s been such a joy to know that the person I love supports and encourages my writing, pushing me to write better with each new poem.
//
Shifting Attitudes: Perspectives of Personal Assistants
August 27, 2009 at 4:47 pm | In Ramblings, The Nitty-Gritty | Leave a CommentTags: daily living, disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, Megan Cutter, personal assistants, personal care assistants
We’ve just started with a new personal assistant in the morning for Barton. It’s great because some of my best writing flows before 8am, and it’s been a busy week, so there’s been a lot to do in the morning. I don’t have to worry about getting both of us ready for the day- I can go ahead with my schedule without worrying about what Barton needs. Being a married couple and adding a personal assistant in the mix can be quite a challenge. It’s can be a little weird, rolling out of bed to let someone into your house at 6am- it’s a pretty vulnerable position to be in, for both of us.
We noticed something interesting, though. Last week, Barton’s personal assistant began asking questions- how did Barton eat lunch, was he okay at home alone, how did he use the bathroom during the day, what agency/program (SDD) did he use, what did he do while I was gone all day. It wasn’t so much the questions, because we are so open and would gladly answer them, but the attitude behind them. While Barton told her he had a full-time contract and worked, she didn’t really believe him. (There we go again, bursting illusionary- bubbles).
Not only that, but his personal assistant began asking me questions- the same ones as well as some others. Not realizing that Barton has already told her, my answers matched his- although looking back later, I realized how I should have just deferred the questions back to Barton since they weren’t really mine to answer. Both Barton and I felt devalued, not just as individuals but as a married couple. As a man, and as a husband, he felt his assistant judging and mothering both of us.
For example, if Barton doesn’t want to eat lunch, he doesn’t eat lunch. He can make his own decisions. Now I can do the wife-nagging bit, but I’ve learned it doesn’t work very well with Barton- it really only pisses him off. So I’ve learned to back off & let him handle it. And if he needs help during the day, he has gotten to know neighbors in our community or figures out how to get the assistance he needs. And I trust Barton, in guiding our family with the decisions that he makes, like when we moved to North Carolina.
This morning, Barton spoke with his personal assistant about his feelings, pretty openly, and amazingly, she was open enough to listen when he told her I wasn’t his mother, I was his wife. We don’t know if her attitude will shift, but I felt Barton become more empowered by addressing these issues head-on, and I felt her attitude shift as she heard him and she spoke about him being an inspiration to live so independently. There’s not a day that goes by where we aren’t learning how to shift perspectives, in others, in each other and in ourselves.
var addthis_pub=”mcutter9″;
Walking Down the Aisle
August 17, 2009 at 2:00 am | In Our Love Story | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, love, love story, Megan Cutter
When people ask us about our wedding, Barton & I look at each other, and our faces light up. I remember before we walked into the church, my father’s advice to be present and remember each moment of the ceremony, and I do remember Barton’s incredible smile beaming down the aisle as we approached.
I knew that Barton was planning to walk us out of the church after the ceremony, and that this was the first time his family had seen Barton stand and walk publicly. At the dress rehearsal, it was the first time we had tried walking down the ramp together, and we had slipped on the surface.
Barton stood for over an hour during the ceremony, and the ceremony was truly unique. We even had a special way that Barton could slip the ring on my ringer; rings that a friend & jeweler custom made for us. I remember when we saw our rings before they were crafted and polished, the process of alchemy was truly at work. We had written our own vows, and we had homemade bread and wine for the Eucharist, made by dear friends of ours.
As we set up to walk out of the church, I remember holding onto his arm to go down the ramp. At the bottom of the ramp, we looked at each other with the delight of “We actually made it!”
To have Barton walk me out of the church was one of the most blessed moments of our ceremony.
Walking Down the Aisle
//
The Glow About Her
August 17, 2009 at 1:52 am | In Our Love Story | Leave a CommentTags: Barton Cutter, disability, disability and love, disability and marriage, disability and relationships, love, love story
Barton and Megan's wedding ceremony.
In November, Megan & I will celebrate our 5th year anniversary. It’s funny that it really doesn’t feel as though it’s been that long. At the risk of sounding extremely cheesy and like every other hopeless romantic on this planet, it was such an incredibly wonderful day. I still have to wonder how I ended up with such an amazing woman. I know I sound like every other guy that loves his wife, but Megan was so incredibly beautiful.
I remember about ten minutes before I walked into the church. My brother Andrew and I along with several other groomsmen were standing outside the church waiting for the okay to go in after Megan finished her pictures. The sky was overcast, and I was beginning to wonder if we were going to get rained on, when Megan’s maid of honor came out to give us the go-ahead, we headed for the front door and just as we opened the door to go in, the clouds broke and a shaft of light broke through and embraced the whole grooms party.
At the opening procession, after I was situated on the alter, I remember feeling my entire body pulsing with anticipation. As Megan rounded the corner to come down the church aisle, the same shaft of light came through the stained glass dove, touching her on the crown on her head, I have never seen my love so radiant and beautiful as that moment.
//
Blog at WordPress.com. | Theme: Pool by Borja Fernandez.
Entries and comments feeds.
