Tags: disability, disability and humor, disability and love, disability and marriage, disability and relationships, fun, humor, interability marriage, Megan Cutter
The headline might be out of a tabloid, or maybe from our own crazy lives. Barton told his side of this story during a Toastmasters Humorist Competition last week, and I was sitting on the sidelines biting my tongue because- oh, I so wanted to tell my version. So here it is:
It had not been that long since we moved to our new house, and I was still getting acclimated to the streets, directions, where we were in relation other places in the community. Barton had a meeting that day, which I knew about, and he had taken the bus, as usual.
So I was puzzled when Barton called asking me for directions on how to get home. Apparently he decided to walk home instead of waiting for the bus, and he took the Greenway, a set of sidewalks through parks that runs through Raleigh. However, the Greenway had not connected where he thought and he was stuck in this neighborhood going around in circles.
Now I am directionally challenged- when I was a teenager, once I got lost on one-way streets in downtown Atlanta & it took me an hour to find myself out. All I can say is- thank God for GPS systems. But in this case, I had to break out a map- actually find the cross street to find where Barton was and how I could get there, which took some time.
I did look outside at one point to see the bright summer sky turn ominous and dark as I was getting into the car- just then, as the bottom fell out. Another call. A neighbor had called to tell me Barton was no standing in the rain and was drenched, of which I knew. When I arrived- they were holding an little umbrella over him, trying to keep him dry, which was not working at all. Now the only point to keeping Barton’s wheelchair dry is that when it gets wet, it could have problems, but Barton out in the rain- he would play all day, so it apparently bothered the neighbors more than it bothered Barton. We were both soaked through. (This isn’t the first time Barton got both of us caught outside walking in the rain, nor the last.)
Another neighbor drove by who had a truck, but Barton’s wheelchair weighs about 200 pounds- it’s not something anyone could manhandle. Now there is a group of people all huddled around Barton trying to figure out how to get the wheelchair in the truck. So I drove back home- by this time the rain was coming down in sheets. I put the two pieces of the metal ramp in the back of the car thinking there was enough room if I put them inside on the back seat diagonally.
Only to find that the back window could not hold the pressure and literally shattered when I closed the door. So now Barton’s still in the rain with neighbors holding an umbrella over him and I am cleaning up tiny pieces of broken glass from the ground, inside the car, it was everywhere- all in the torrential downpour.
By the time I got back to where Barton was, the rain had stopped and the sun was shining, and he decided to walk home, but he still had to follow me out of the windy neighborhood- which was a good thing since all of this chaos happened because he was impatient and didn’t want to wait on the bus.
Tags: Barton Cutter, disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, disabled defense, disabled protection, disabled self defense, self defense for people with disabilities, Speaking Engagements
This past week, we were given the opportunity to give the keynote presentation for West Virginia’s People First Conference. We had the pleasure of addressing 200+ people on “Staying Safe in the Community,” and what that entails for people with disabilities, their direct support and their family members. Much of our discussion focused on the importance of developing a greater awareness of one’s surroundings in order to not only recognize potential danger before something happens, but more importantly, to define one’s own safe space.
One participant described this space as a bubble around someone that is unquestionably one’s own. For many people who have disabilities and rely on the assistance of others from many daily living tasks, maintaining the space may not often be as clear-cut as others who don’t rely on the same level of support.
Because of this, it becomes all the more important that people with disabilities have a clearly defined sense of what is and is not acceptable for those around them to do. It is equally important for them to have the skills, ability and courage to be able to reinforce these boundaries when necessary.
While there are many levels to this, many of which may be considered self-advocacy skills, Megan and I had the chance to go beyond what is often covered in other type of advocacy training and address issues of personal safety and protection in direct and tangible ways. Working with smaller groups of participants in several breakout sessions, Megan and I took participants through exercises to enhance their awareness, set their own safe space and protect themselves if that space was not honored. Each person, no matter what their initial level of ability was, came away with a more defined sense of empowerment and ability to act.
It is such an incredible experience to witness the transformations that occurs in others when they are not only given the tools to empower themselves, but also have the space to explore these tools and discover their own capacity to survive and thrive in an overwhelming situation.
Tags: disability and love, disability and marriage, disability and relationships, disability self advocacy, disabled defense, disabled protection, disabled self defense, interability marriage, Megan Cutter, personal assistants, personal care assistants, self defense for people with disabilities, vision
Last year, we traveled to Jackson’s Mill, West Virginia and spoke at a People Conference, sharing our personal story and discussing creating healthy relationships for individuals with disabilities. In the session before the end of the conference, there was a talk and discussion on relating abuse to people with disabilities. Over 80% of people with disabilities will experience some kind of abuse in their lives, and more often than naught, it will be from those they know- direct support staff, families or caretakers. Many people were open about sharing personal experiences about abuse or the crossing of boundaries by others.
This year, we were excited to come back to the People First Conference and shed light on creating safety in the community and creating personal safe space. We also talked about when your safe space becomes unsafe, both the physical and emotional impact.
The next day, Barton and I taught basic awareness, empowerment and a few self-defense skills to 30 participants during the morning. We saw participants come alive, become engaged and open up to how they can apply these skills in their own lives.
Barton and I worked well together during the week, building and playing off of each other. It is a reminder to us that in addition to our individual goals and dreams, we have this work that we do together that is undeniably important. It cannot happen if it is just Barton or just myself- it is a reminder of our partnership, our marriage and our vision of reaching others.
We each bring components that others can relate to, whether it’s Barton’s experience using a wheelchair, mine as a female, or or our story of how we met and how we overcome adversity together. When we are able to come together and work in this way, incredible things happen. And others are able to see, in tangible ways, how step by step, they can do the same.
During the conference, we took a break and spent a few hours writing haiku, lying on the grass in a spacious field. While I kept feeling the tugs of many other projects I should be working on, Barton brought me back to the present moment, enjoying not only the conference itself, but also the time we spent together.
Tags: daily living, disability, disability and love, disability and marriage, disability and relationships, finances, interability marriage, Megan Cutter
Three years ago, when Barton found out that a grant ended and while there were promises of continuing employment with that organization, in the end, he had two weeks notice that his position would be cut. Admittedly, I did not handle the news well. Several patterns were already in place to provide the right atmosphere for combustion.
Moving from Alabama to North Carolina was not easy, as to our hurricane tale, but also was difficult financially. We moved with quite a bit of debt, add to it moving into a house, a new roof, Barton’s surgery, and my pattern of not wanting to tell Barton no- especially when it came to training. With the cut of Barton’s grant, I was on freak-out mode.
Over the last few years, we both began to recognize ways that we were creating to the dissonance, and took time to look at and began to shift those patterns. Life is still life- we are in the process of another set of changes, and this time, we’ve been able to communicate more effectively, stay open even when we have tough conversations and work on solutions together.
Financial difficulties are a part of everyday life in our post-recession world, but for families with disabilities, there tend to be more issues caught up in the financial web. Everything from medical care, insurance, direct support staff, transportation, employment is related to a dollar amount.
Just because we’ve blazed our own path doesn’t make us immune to that as we’ve had to cut morning help for Barton to a minimal level (and the gracious gift of angels), hang on to my little Honda which is aging quickly, delay repairs to Barton’s equipment (we couldn’t believe that one strap was over $300 to replace and not covered by insurance), and are both experiencing contract changes at the same time.
Yet, we feel more connected because we are working together in a different way. We’re both taking better care of ourselves individually. I am not shouldering all of the burden anymore, and we are talking in a different way that is encouraging and supportive. It takes a lot of coordination and a constant reminder to stay open, and above all, a fundamental belief that no matter what, we will be okay. And that foundation is how we have learned to soar.
Tags: Barton Cutter, daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, finances, personal assistants
The past several weeks have felt incredible amidst the external chaos of the various challenges we face such as finding new contracts and piecing together what we have now to stay afloat as Megan and I have been moving together in an amazingly fluid fashion.
While it has been clear for some time that both of us have been making headway in terms of out own abilities to communicate with one another while dealing with our own internal processing, it seems that a month or so ago, I discovered a foundational component to one of the beliefs that kept me out of a state of reaction. This has truly been amazing for it’s felt like I’ve undergone a complete face-lift and I would think Megan would agree that I’m much more tolerable to live with.
After we moved to North Carolina, neither of us wanted to acknowledge where we were financially. Moreover, I had no idea, nor did I want one, of how much debt we were in. Megan knew this and because she didn’t want to ask me to slow down in any way, she was hesitant to show me what was really going on. To compound this perspective, in the moments where she did try to provide me with a clear picture, I would automatically erupt in anger and refuse to work on solutions.
Though it was a long journey, we finally found the courage, over time to face our self-made reality. Yet, it took me even longer to learn to approach this process with openness rather than reactivity. A major component of this shift was catalyzed by my own ability to experience and let go of the fear that I was feeling without allowing it to control my response or mutate into another emotion.
While I recognize that a month may not erase patterns from the past six years entirely, I’m very excited about what appears to be a fresh beginning, and it’s even more exciting to me to explore the openness and freedom that is beginning to take root for both of us.