Conversations with Perspectives of Disability
December 15, 2010 at 6:54 pm | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty | Leave a commentTags: daily living, disability, disability and marriage, disability and relationships, disability self advocacy, interability marriage, Megan Cutter
When I first had a chance to work with Barton, I was at a Camp in Arizona. We were both working in the kitchen washing dishes and cleaning. In my sweet Southern Alabama slow voice, I asked Barton if he needed any help. One of our close friends took me aside and asked me point blank if I had a problem with Barton. At first I didn’t get it, and responded no. Yet my vocal inflections were telling a different story. It was clear that I was uncomfortable and wasn’t sure how to relate to him. She spent a few minutes explaining that Barton had been through all of the same training. She pointed out how I was patronizing Barton in the way I was speaking.
Recently, I have had a few discussions with someone who is working different issues around the disability of their partner. The easy route is to peg everything on disability. Yet by doing this, we don’t see the fullness of the person inside.
What are the issues between Barton and I as a husband and wife- what are the issues between Barton and I- someone with a disability and someone without? As much as we can, Barton and I work toward a perspective that we are two whole people coming together in our marriage. Of course things are going to come up that incorporate his disability. And- things will come up in my own abilities as well. But that’s not the core of who we are or how we relate to one another.
Recognizing that we all have strengths and faults, no matter what our ability or inability is important, not only in our relationships with others, but how we identify ourselves. In many ways we become the labels we name ourselves to be.
What are the labels you write on your skin, and are there any you need to erase?
The Healthy Cripple
October 24, 2010 at 10:39 pm | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty, wheelchairs | 8 CommentsTags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, disability self advocacy, humor, interability marriage, Megan Cutter, wheelchairs
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.
Playing Bodyguard
October 14, 2010 at 10:17 pm | Posted in Barton's Blogs, Uncategorized, wheelchairs, Wild Stories You Just Wouldn't Believe | 2 CommentsTags: Barton Cutter, disability and relationships, disability self advocacy, disabled self defense, humor, interability marriage, self defense for people with disabilities
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.
Finding the Safe Space
September 12, 2010 at 3:41 pm | Posted in Barton's Blogs, Speaking Engagements | Leave a commentTags: 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
Barton and Megan training in Budo Taijutsu in Alabama.
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.
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The Work We Do Together
September 12, 2010 at 3:30 pm | Posted in Megan's Blogs, Speaking Engagements | Leave a commentTags: 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
Barton and Megan before speaking at the People First Conference at jackson's Mill, WV.
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.
Megan's artistic picture taking a break at the Conference at Jackson's Mill.
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.
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Pieces of Wood on the Kitchen Floor
June 19, 2010 at 10:07 am | Posted in Megan's Blogs, wheelchairs | Leave a commentTags: disability and humor, disability and love, disability and marriage, disability and relationships, disability self advocacy, interability marriage, Megan Cutter, wheelchairs
Damage to the doorframe.
Yesterday I came home and it was clear that the room had been rearranged. The rug had been moved, not just a couple of inches, but clear across the room. The table with files on top had been moved vertically with several piles of movies on top. Our two dogs and new puppy lie on the sofa, all in a row, exhausted, with guilty looks on their faces. And Barton was tipped back in his wheelchair just cattycorner- the doggie gate strewn across the kitchen floor.
Okay- and what happened here? And Barton smiles. The wheelchair repairman had been here, and like a comedy of errors, the dogs had started barking as he went to the front door to ring the doorbell. Barton’s wheels got stuck on the rug, hence dragging it clear across the room. Once Barton got his chair unstuck, the repairman had come to the backdoor, and Barton knocked the doggie gate off in the kitchen. I wonder what the wheelchair repairman must of thought- he knows our crazy antics pretty well, so it would be nothing new.
It was like the time where I came home from an overnight out-of-town trip and Barton was “supposed” to be watching the dogs. When I walked up the ramp, I knew disaster had struck as Bear and Basho had ripped apart a bed comforter and had strewn stuffing all over the porch and living room. Thinking that something tragic had happened, I ran to the office, where Barton was working on his computer, completely oblivious to the disaster that lay just outside.
Or when I came from to find the office doorframe literally sideways. Hmm. We’ve banged ripped nails back into the wall, pulled splinters of wood off, and finally Barton just ripped one side clear off.
As Barton told me the comedic story, I picked up the remaining pieces, moved the rug and furniture back to their original places, and spent a good fifteen minutes pondering how to put the doggie gate back together. Later, I would find a piece of wood, in the kitchen, ripped from the door frame.
I’ve gotten used to coming home to find pieces of wood dislodged from their original place. It is the consequence of having a home too small for a motorized wheelchair. We still haven’t repaired the dents in the hallway. But, it is a home well lived and well loved.
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Misconceptions that Hit to the Core
June 16, 2010 at 10:11 am | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty | 1 CommentTags: disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, interability marriage, Megan Cutter, personal care assistants
Barton and Megan break down social misconceptions.
This week I had a conversation with a friend, but I was struck by misconceptions that hit to the core. As both Barton & I are in the midst of job transitions, this summer we are cutting back, everything that we can. At the moment we cut out morning help, something that we don’t normally like doing because it shifts our roles. But because of how expensive it is, we had to cut back. My friend responded by talking about how she understood, she took care of her family, and it’s like taking care of a baby, but a big baby. What? Are you serious? Really?
This comment floored me- absolutely floored me. Now my response was quite defensive, and if I had been paying attention I would have pointed out how sad it was that she was not able to see beyond the actual issue. Of course, instead I went on to defending my husband.
Yes, as we grow older, we lose our memories, our capacity to take care of ourselves, to be independent. Many of us take care of parents and grandparents as they grow older or transition into a state that is more child like. But this misconception hit to the core that Barton was a big baby because he had a disability and needed additional help.
Barton is an independent man, husband, coach, teacher, poet. His heart and service is invaluable and he has worked his butt off to get where he is. He doesn’t like relying on others, not even me, and works hard to be as independent as possible. He provides an example for others to open the space for them to see that they too can live fulfilling, independent lives.
Looking at those with disabilities as being babies is dehumanizing, demoralizing and strips them of any value or worth. It’s easier to think those with disabilities have no value in the community whatsoever where we could put someone in an institution or dismiss them altogether.
Often people tell me that I am so good to have married Barton, as if Barton had no say. Do they not know that he was the one to asked me to marry him? I am so privileged that he chose me, especially since it’s common that women swoon over his bright blue eyes and smile.
Would she have believed me if I had talked about how much Barton does to take care of me? I doubt it. Many people don’t see the ways in which Barton takes care of his family, work, service. They only see what they want to see, and often times, miss the heart that is right in front of them.
Later when I talked about adoption & fundraising we were doing for accessible equipment, she quickly assumed we would be adopting a special needs child because I was talking about accessible equipment. Her shock that Barton could take care of a child was clear. Again, the misconception that Barton could never be a father or take care of a child even though he’s in a wheelchair or has a developmental disability.
So much work is being done to negate these misconceptions, and just in the time Barton and I have been together, we constantly push beyond the barrier that people place around him, around us together as a married couple.
Yes, right now it is tough- it is tough for everyone hit by the economic turbulence. And we aren’t immune to that. But it does not mean that we can dismiss those with disabilities or devalue their contribution to our community.
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