Real Life Disability: What Do You Do When the Whole World Doesn’t Think You Are a Man
July 20, 2012 at 11:32 am | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty, Wild Stories You Just Wouldn't Believe | 1 CommentTags: community safety, disability, disability and marriage, disability and relationships, disability misconceptions, interability marriage, Megan Cutter, misperceptions and disability, views on disability
Barton taking Megan out.
Have you ever heard of the expression, “Good intentions can lead to hell” or “The world is full of well intentioned fools?”
When I met Barton, I was one of them. We were washing dishes, and I talked down to Barton in my sweet Southern voice. Until a friend took me aside, “Do you have a problem with Barton. You are patronizing him. He has been through all the training you have, and more. Don’t patronize him.” From then on, I have seen Barton just as I would any other guy, one who holds his own, and is very capable of making decisions. Now, I tend to forget about this veil, until it is thrown back in our faces, that is.
Barton and I were just at the point of recovering from our hell week that Barton mentioned in our previous blog, and we had a fabulous week in Hawaii, though came home grieving the loss of our dog Basho while we were away. We were getting our footing this week, feeling positive, energized and focused.
Barton had a meeting, and was driving his motor wheelchair along side a busy road close to our home. The joystick to his wheelchair came off, and flew into the busy road. He stopped a woman to help him get it, but the woman obviously had her own story in her head, assumed Barton was in distress or had mental difficulties and called the Raleigh Police Department and the local EMS.
What ensued was outrageous. Barton tried as hard has could to speak, but was so flustered and upset this woman had actually called the police, all he could say was, “I’m fine.”Unfortunately, in excitable situations, Barton’s speech is even more slurred. He was not given the time or space to explain that it was not a big deal, he just needed someone to pick up the joystick, put it on so he could be on his way.
Barton was not listened to by anyone, not understood, not respected, and he was not given a choice to leave.
The local EMS was even worse, and if we had grounds, we would sue them. They tried to take control of his motor wheelchair by putting it in neutral, demanded to walk him to his destination. One EMS staff even told him, “If you die, and WRAL gets a hold of this, it will ruin our reputation.” The EMS tried to disable the motor on his wheelchair, a piece of equipment that costs over $30,000. Not only that, but Barton’s motor wheelchair is his only means of independence, and here, they were disabling his freedom and independence as a man.
Ironically, Barton and I do so much to educate inclusion awareness, inclusion leadership training for organizations, personal empowerment and community safety. In fact, in just a few weeks, we will be teaching a self-defense program called DisAbled Protection to Bridge II Sports participants.
Later, as we began debriefing the situation, Barton talked about how much energy he spent just trying to be seen as a man, a person. We tend to compartmentalize people into categories and boxes, according to what we think we know. So what happens when we have a situation we don’t know? Especially for the police community, who are trained to see people as needing help or needing to be stopped from harming others. There are victims and bad guys. Many people see Barton as a victim, someone who needs to be cared for. They don’t see him a capable, resourceful and whole, which sadly they miss out on the wonderful personality and gifts that he has to offer the world.
Unfortunately, there is just about no way to speak to and educate the woman who called the police, about what really was going on. Barton feels bad because if the police officers had actually listened to him and understood the situation, they would have had a good laugh at how silly this woman was. And he feels bad that they were taken away from their job, of helping those in real need.
And instead of laughing at how absurd this woman was or the situation was, Barton came home upset, angry and saying, “What do you do when the whole world doesn’t think or treat you like a man.”
And sadly, there are no answers.
The Week That Wouldn’t End
July 15, 2012 at 2:34 pm | Posted in Barton's Blogs, Ramblings, The Nitty-Gritty, Wild Stories You Just Wouldn't Believe | 1 CommentTags: Barton Cutter, disability and humor, disability and love, disability and marriage, disability and relationships, humor, interability marriage, vacation
Have you ever had a terrible, horrible, no good, very bad day? Well, we had one crazy week before our vacation.
Monday at 4am we drove to Charlotte to be at a daylong meeting.
Tuesday, 6am: drove home to meet clients for both Megan & I. We got home at 5pm to find Basho, our younger dog, limping. Megan took him to the vet, after x-rays found he would need surgery. Woke up at 1am, trying to decide what to do for him & was less than compassionate toward Megan.
Wednesday: Megan rushed to catch up on work as a construction crew came to repair the foundation of our house. 2pm: ran to the doctor’s office to have my pump refill, 4:30 Megan & I hadn’t eaten all day, picked up a burger & shake. 5pm: five minutes to breathe & eat. 6:30pm: On the way to bed, felt nauseous. 9:30 after 2 1/2 hrs of sleep woke up & got sick. Megan threw me in my bath chair to clean the sheets, wash me off. We decided it was wiser if I slept in my chair tipped back against the wall. 5am woke up cramped from sleeping in my chair but Megan was asleep, so I wasn’t going to say a thing. Woke up every hour for the next four hours.
Construction crew arrived at 9am on Thursday. I slept till 12:30 even after Megan asked me to wake up because she had to leave. 1:15pm: Megan enters “Barton, have you heard the AC. Come out on the back porch.” I go out on the deck & hear what resembles a sub-machine gun on steroids. We turn the AC off. 7pm Megan calls all of our neighbors trying to find someone who has floor fans that we can borrow. 9:30pm friends deliver 2 high-power fans from their office. 10pm sleep maybe.
Friday 6am: the ultimate test chicken noodle soup. It stays down thank God. Trying to rehydrate, pounded an entire liter of Poweraid in less than 5 min. 12pm: the final floor lift. We hold our breath, what else could go wrong? Will we have plumbing? Who knows, and we have to leave. 1pm: Chapel Hill Megan & I present an hour and a half video seminar on self-care for professionals yes, I did say self care. 3:30 Finally get home, I hope our plumbing still works. Only three cracked tiles in the bathroom, and the toilet still flushes. I’m saved. Megan wants to go out for dinner. I still don’t trust my stomach; no way I’m eating real food yet.
Saturday 3am: This morning I wake up on my side and need to roll over. I wake Megan who is irritable because she’s been so sleep deprived. 9am: Wake up have a marvelous conversation with my love while cuddling in bed, up by 10, coffee shop by 10:30, working on the book. 2pm: Home to finish my article, it’s 86 degrees inside the house & we sit on the sofa to do nothing because it’s too hot to move. We survive by eating Italian Ice. Sunset 8:30, Megan & I still have work to do.
Some weeks are like this. We need a vacation. Thank God we got one!!
Barton and Megan on The Big Island.
Barton and Megan at Volcano Park with Rainbow
Drinking from a coconut, Oahu.
We returned from vacation to find that Basho had suddenly passed away. To our Wild Child, you brought joy and youthful vitality into our lives, you will be missed!
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.
Directionally Challenged Rescues Lost Husband in Freak Summer Storm
September 22, 2010 at 6:12 pm | Posted in Megan's Blogs, Ramblings, Wild Stories You Just Wouldn't Believe | Leave a commentTags: disability, disability and humor, disability and love, disability and marriage, disability and relationships, fun, humor, interability marriage, Megan Cutter
Having Difficulty with Directions is Not New to Barton & Megan.
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.
//
In the Wake of Katrina’s Path
August 27, 2010 at 3:34 am | Posted in Megan's Blogs, Our Love Story, Ramblings, The Nitty-Gritty, Wild Stories You Just Wouldn't Believe | Leave a commentTags: disability and love, disability and marriage, disability and relationships, hurricane rescue, interability marriage, Katrina, Katrina relief, love story, Megan Cutter, personal assistants, personal care assistants
Though we didn't experience flooding by Katrina where we were in AL, Barton & I have been in storms where it has flooded.
Barton and I are huddled in the bathroom, his power wheelchair blocking the door. In the background, tornado sirens scream. Over the radio- the announcement that the EMS station lost power and they can’t tell us why the sirens are going off. The phone rings. Thinking it’s my grandfather who is two miles away and living alone, I answer. My father, stepmother and brother burst into Happy Birthday. Do I hang up? The epitome of irony…
Everyone in the South has their own Katrina story, where they where, if they were rescued, if they assisted in the rescue effort, in church praying for those who lost loved ones and homes, those on the ground volunteering in rescue camps or sorting through and handing out donated items.
I was already off work since Barton had a doctor’s appointment in Birmingham, and we had planned a night out on the town for my birthday. Instead, we drove back to Tuscaloosa with green and gray clouds swirling overhead, the news of New Orleans already blasting over the airwaves.
That night, we huddled in our safe spot, (not how I was expecting to spend my birthday) and when we ventured to the bedroom, I slept with boots on, just in case I needed to haul us out of there. Katrina was still a Category One, and there was a tree over the bedroom. I was praying that it wouldn’t fall, not only for our sake, but so that we could sell the house as we planned! We were lucky and sustained only minor wind damage, but several houses in our neighborhood did have trees down.
Two weeks earlier, Barton found out that instead of moving to North Carolina that October, we would be moving on September 1st. Unprepared for the quick turn-around, I was scrambling to sort through items in my mother’s house, prepare the house for sale, and getting us squared away in North Carolina while wrestling the arrangements for resigning from my work (as we needed health insurance for as long as possible). We decided that Barton would move on September 1st, and I would stay behind for a week.
On August 31st, I was pulled into meetings about the rescue effort, when I knew the next day I would be resigning from my job. It was a difficult moment to tell the CEO that I could not participate in publicity for relief effort. Barton moved up to NC, and I was left to fend for myself. The days following would be harrowing- news of the gas lines lead to gas siphoning, gas price gouging- I would drive down the street to get a rationed two gallons at $4.75 a gallon, and the emptying out of grocery stores. Other than the grocery store and gas stations, the streets were empty, and you could feel tension in the community rising. While it was nothing like New Orleans, I learned a lot about what happens, when as a community, we are all in panic mode. I was lucky- I was kept from watching those horrifying images over the television by the overflowing list of things to do.
While we only lost power for two days, my grandfather didn’t get power back for over a week. Though he was stubborn and wanted no help, I would take a cooler with fresh food for the day, cleaned out his freezer and leave flashlights and candles on the counter when I left. I sorted and packed items for the move and worked hard to repair the house. I made a huge donation pile for hurricane relief. (Later I would realize that a box of our childhood toys had accidentally made it into that donation & am thankful they were put to use). And I still worked, over my eight hours a day, to prepare for my exodus of seven years working in corporate advertising.
The hardest part was moving. At a time where everyone was huddling together, working and volunteering, we were leaving to go to a place where we could better sustain our family. I didn’t see or say good-bye to many of my friends until we actually sold my mother’s house six months later.
But Katrina isn’t just about remembering what happened, it’s about how we live now. Are we prepared for another natural or unnatural disaster? Really? One film called On Higher Ground talks about emergency preparedness for those with disabilities and their direct support professionals. While we have made long strides, there is still much work to be done.
Katrina made us think about what would we have done, we went through scenario after scenario- what if Barton couldn’t get the medicine he needed, what if we had to leave without his wheelchair (either of them), what if we had to rescue the neighbors (what would our different roles & procedures be), what if we couldn’t get food, what if I couldn’t get to NC? Trust me, we talked about & had a plan for everything we could think of, and some of those conversations were difficult to talk through.
Even when we moved into the new house, we asked- how could I get Barton out of the house if there was a fire blocking the exits…While the “what ifs” can drive you crazy, it’s important to know how to take care of yourself & how to take care of others.
As we approach the 5th anniversary of Katrina, we are reminded that the people around us are precious, that anything can happen, and to take steps to prepare for an emergency beyond our control.
Check out some resources to create your own emergency plan:
http://www.dotcr.ost.dot.gov/asp/emergencyprep.asp
http://www.ready.gov/america/getakit/disabled.html
Scouting It Out
May 31, 2010 at 7:22 pm | Posted in Barton's Blogs, Marley & Me x2, Megan's Blogs, Wild Stories You Just Wouldn't Believe | Leave a commentTags: Barton Cutter, daily living, disability, disability and love, disability and marriage, disability and relationships, dog stories, dogs, Megan Cutter
Scout Playing with a Maple Leaf
Last Tuesday, we were out for a morning walk with Bear & Basho, our two Labs. We were mostly through our walk when a tiny brown puppy came running up to Bear and Basho. There was no collar, and it was clear he had just been neutered. As he played with our boys, we noticed that both Bear & Basho were unusually calm around him. As Megan took a few minutes to inspect him, Barton looked around trying to find an obvious hole in the fences of some nearby houses from which he could have escaped.
We decided we couldn’t leave it him since he was such a young puppy, and Megan carried him back home. She took pictures to make fliers and took him to our vet to see if he had been micro-chipped.
That afternoon, we went back on Craig’s list and found his listing. Megan called right away- it turns out that Scout is a Sheppard/Terrier mix who was staying with a foster family, and was looking for a permanent home. Megan called Barton to let him know that the woman was coming to get him that afternoon, and that she had had a long talk with her about Scout. When Scout first appeared, it was clear to both of us that he was drawn to our pack. That afternoon when the woman came to get him, he simply sat down beside Barton’s wheelchair and refused to move. A new dog- are we crazy??
Scout & Basho Crashed Out
When Megan got home that day, we talked about what another dog would be like and decided to at last try it out. On Saturday, Scout came to stay with us a few days, and though the final paperwork isn’t done, he has found himself a home. Bear was a bit upset the first day, but has since relaxed. They have played together quite well until they all crash out for a nap. We were amazed at how well they got along, after establishing the pack of course. We couldn’t believe his personality because he has been so relaxed around our two rambunctious labs and in turn Bear & Basho have been laid back as well.
We hope to get everything squared away and are excited to have a new pup in the pack.
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Molten Praline Pecans Spilling Over
April 1, 2010 at 5:15 pm | Posted in Megan's Blogs, Wild Stories You Just Wouldn't Believe | Leave a commentTags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, humor
This morning, I was telling a story about kitchen disasters to Barton’s morning assistant as Barton & I ate breakfast. Two years ago, Barton had surgery to replace his Baclofen pump (a story in & of itself) since it had been “recommended for replacement” based on a piece of the motor that could stop working properly. A nice way to avoid the word recall. Barton decided to have surgery around the holidays to avoid missing workdays, and thankfully, we were home the day before Christmas.
Since I had missed making Christmas gifts or sending out holiday cards, Christmas morning, I was inspired to get into the holiday spirit by making praline pecans. Barton was already up, but unfortunately still not feeling well due to the lingering effects of anesthesia & the surgery.
I had always used the same bowl to make praline pecans, and in my normal routine, took out the blue plastic bowl and filled it with butters and brown sugar, sticking in the microwave. Our microwave sits just over the stove & oven, so I have to reach up to take anything in/out.
When the timer went off, I lifted the bowl up to pull it out of the microwave, but the bottom of the bowl had melted, leaving the plastic bottom, as well of the contents, into a liquid goo, filling the bottom of the microwave spilling over, dripping down onto the stovetop and down the side of the oven to the floor below.
Of course I was freaking out, and Barton, on the other side of the house, couldn’t figure out what was wrong- obviously the expletives were a little louder than I had realized. This was another America’s Funniest Home Video moment. If only we had had a video camera rolling.
The rest of Christmas morning was spent cleaning up the mess before it hardened into praline plastic candy. Trust me- scraping out the microwave on Christmas morning was no fun.
I admit, I’m not the greatest in the kitchen & prefer to stick to the simpler dishes than an exquisite cuisine. But Barton has his share of food mishaps as well. There’s a reason we have two black labs who both vacuum the floors with their tongues.
Between the two of us, in the manuscript we are working on, there is a whole chapter devoted to the cooking & meal comedy of errors that we tend to play out. It’s great that humor plays such an important part of our lives- trust me, we add quite a bit on our own.
We’ve gotten used to the kitchen mishaps, and Barton has actually broken me out of my shell, as I begin to explore with dishes and spices that aren’t necessarily called for in the recipe.
Still, there is plenty of room for error…
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It’s No Laughing Matter, Or Is It…?
March 25, 2010 at 5:34 pm | Posted in Megan's Blogs, Our Love Story, Ramblings, Wild Stories You Just Wouldn't Believe | Leave a commentTags: daily living, disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, interability marriage, Megan Cutter, vision
(Oh, no, don’t laugh… it’s no laughing matter ;o)
We’ve been slow to post video blogs, but, we’ve had a blast along the way. Here are a few outtakes from our adventures in Hatteras Island for our 5th year anniversary. Because of the incredible location, we had planned to video blogs for Love Rolls On, Cutter’s Word and Blooming Lotus Coaching. Since we were in the middle of the Nor’eastern with flooding, life just didn’t work out that way. Instead, we have an incredible story to tell for years to come.
Often, we are asked what makes our relationship successful. One of our secrets- smiles, giggles and crazy laughter. Sure, we’re a married couple, in addition to the joyful times, there are difficult obstacles, lack of communication, times when we don’t agree, and there are times where we are both quick to impatience and frustration.
Yet, we often have a blast with working, living, being with each other, pushing each other to new levels. Laughter is what brings us back together and back to the present moment.
Before Barton and I got married, I had mentioned that I had laughed more in that first year of knowing him than I had my entire life. And it’s true. Barton has this way to make everyone around him smile. And together, we always get ourselves in these situations where we wonder how did we get here/what just happened/are you serious?
This year has been all about transition, transition in our work, hopeful towards our dreams of beginning an adoption journey, taking steps outside of our comfort zone, and sharing our vision with others in new ways that neither one of us could have imagined.
While we don’t know what precarious situations we’ll get ourselves into next, one thing’s for sure, it’s an adventure, and we’re having a blast.
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Throwing Barton from His Wheelchair
February 7, 2010 at 9:44 pm | Posted in Megan's Blogs, Ramblings, wheelchairs, Wild Stories You Just Wouldn't Believe | Leave a commentTags: disability, disability and love, disability and marriage, disability and relationships, Megan Cutter, wheelchairs
Listening to Barton tell about our adventure with curb-cut snow drifts this morning reminded me of when I threw Barton out of his wheelchair. Yes, if we had had a video camera, we would have won a thousand dollars on Americas Funnies Home Video’s. Our friend had asked us to teach his martial arts class that Saturday morning, so we drove in rain just beyond the border in Mississippi. I had parked the car, but we realized that we needed to get to the other side of this field.
We made our way through the marshy field. In front of us, I could see this massive mud puddle, and I had the bright idea that if I gained speed, we could make it through the thick mud. I wasn’t a physics major, obviously.
So I gained speed, and we reached the mud. And the wheelchair stopped. And Barton didn’t. Holding onto the bag with all of our gear, and with a broke seatbelt, Barton flew face first into the mud. Within seconds someone else was there, and we were hauling Barton back up into his chair. I wiped the mud off of his face, trying not to laugh, but not being very successful.
I would love to say this was the only incident, but alas, there are others. I’m only lucky that with every story to be told, Barton ends up with a smile on his face.
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Love Rolls On! Unlikely tales of marriage, love and disability 