Diversity and Inclusion: Refusal of Service Still Affects People with Disabilities

There have been a handful of times when I, the able-bodied wife, has answered those who refused to serve or work with my husband, a brilliant college-educated and intellectual man with Cerebral Palsy.

Maybe the first time I experienced the assumptions about Barton was when I was asked to speak to my grandmother. At that time, I visited her when Barton and I were engaged, but our family had not met him yet. A social progressive of her time, I was asked:

What kind of life would I see for myself marrying a retarded man?

Barton and Megan in Tucson, AZ.

Barton and Megan met in Tucson.

Shocked, I could not believe that a family member, someone who had spent a lifetime helping others in need and a family that prided itself on non-discrimination was speaking in this manner. What internal and subtle thoughts does each of us carry subconsciously about “the other”?

When my family had the opportunity to get to know Barton, there is now undeniable support for our marriage and our lives together. All it took was the time to get to know one another on a deeper level.

Refusal of Service: Keeping “the Other” Out

Since that time, all too often I would see the number of times people would hang up on my husband because they did not understand him or nod when in actuality, they could not keep up with the long-winded soliloquies that would break down all barriers of capability for a man in a wheelchair.

Even in communities that claim acceptance. The first was to our church community, where we were treated harshly for wanting to find an accessible entrance inside the building, and how every time we came on a day other than Sunday, someone had to spend at least 20 minutes finding the keys to open the gate to let us in. Clearly, in this instance, gates were meant to keep people out just as much as they were to keep valuables in.

While we left that particular church for a time, we returned several years later to find improvements in access and inclusion for people with and without disabilities. Yet, there is more work to be done for full inclusion.

Barton speaks at the MV-1 launch event.

Barton speaks at the MV-1 launch event in 2014.

On another occasion, we met a nationally recognized speaker highly regarded in our community, who would later tell us we could not join a speaking-club because Barton would not be able to complete the objectives due to his slurred speech.

Ironically, Barton has spoken at many national and local conferences and events since that time.

Sadly, now when we visit any other speaking club, the first question we ask is if they would accept someone with slurred speech.

While we think that the refusal to serve a person with a disability doesn’t happen, it happens all too frequently.

Recently, I asked Barton if he could pick out new phones for us when I damaged mine beyond repair. He walked down to the store he had done business with before, and the manager refused to serve him. Refused. Barton was giving them our business, and because they didn’t want to deal with someone they couldn’t understand, Barton left empty-handed. I even called afterwards, and the manager would not even apologize for this overt discrimination.

So, we changed cell-phone carriers.

Breaking Down Barriers by Embodying Life

Breaking down barriers as a couple. Photography credit: Karen Kain

Breaking down barriers as a couple. Photography credit: Karen Kain

Barton has his own way of breaking down barriers by shining a brilliance that is undeniable and challenges the concept of what people think is possible.

And when we are together, people see the love between us which melt not only the assumptions about us, but themselves as well.

If we can find love and happiness, what is holding them back?

Even in moments when we let our guard down, we impact other families. At a networking event last week, a mother approached us to share her own experience celebrating the life of her daughter with a severe disability who has lived longer than the medical community had assessed.

In sharing ourselves, we change the way the community looks at people with disabilities.

Our national and statewide rhetoric is dividing people into boxes, not for the amazing, capable, thriving souls that we are. We are seeping ourselves in the division of the other, when we (as a culture) become fearful, distant, angry, and violent against someone we don’t understand.

Are there people who do horrible things, yes. Do we need to stop them, yes. Do we need to punish entire cultures and communities because of the actions of specific individuals, no.

The Value of Diversity and Inclusion

Barton and Megan Cutter at a family event.

Barton and Megan Cutter at a family event. Photography credit: Steve Rushing.

Everyday, Barton pushes me in ways I wouldn’t expect. We go through life’s challenges in waves, sometimes brilliantly succeeding and at other times miserably failing. And I would not take back one single moment.

I have learned to laugh. To love. To see. To slow down. To question. To persevere. To pick up, and let go, and learn, and move on. And because of this, I live a deep life.

Sure, there are times that are incredibly frustrating when we are ready to give up. And at other times, the undeniable way that we move through life as a couple is magical and mystical. And we are reminded of the purpose we serve.

And I am better for living with someone who challenges me in ways that I would not expect.

What if the communities in our world came together and moved in this way, learning from one another? What if we unlocked the gates? And we could truly see the other, even if we did not agree, as different aspects of ourselves?

Related Posts:
Independence Day: Celebrating Diversity and Independence with a Disability
Nurturing Our Relationship: Coming Back to the Source
Stepping Up to Embrace Otherness

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Independence Day: Celebrating Inclusivity and Independence with a Disability

A year ago, Barton and I spent the day recording a video that would be used in an application for The Coaches Training Institute Certification Scholarship Program.

Barton had just had surgery to replace his Baclofen pump, and the call for scholarship applications went out the week of his surgery, with the deadline the week after. We were both worried. How would he perform in a video after having gone through surgery, laced with the effects of anesthesia?

Amazingly, Barton came out of surgery fairly unscathed. We walked down the street for an outdoor video shoot. However, it was the summer, and the neighborhood was filled with the sound of lawn mowers and electric bush trimmers. We had one afternoon, and time was running short.

Venturing back inside, Barton wanted to do take after take- he wanted it to be just right. We spent hours making sure to pull out key words and phrases that highlighted his message. It had to be just right. And hours before the deadline, he submitted his application.

Barton Cutter: CTI Co-Active Coaching Application Video

This Independence Day, I worked on projects in the morning, piled up from week that had set us both behind schedule. At lunch, we had to get out.

We had to get outdoors. We had just found Durant Nature Park a few weeks ago, where we had enjoyed lunch by the side of the lake, looking at turtles delicately balancing on the log resting in the water. This time, however, we would be a bit more adventurous.

Barton Cutter navigating the path not taken at Durant Nature Park.

Barton Cutter navigating the path not taken at Durant Nature Park.

We had to take the path not taken.

Beginning with a bridge with a little drop on the other edge. There would be no return, only forward. The path was laden with tree roots and branches, over dry waterbeds, and over small bridges.

For an able bodied person, we don’t think about stepping over a trees roots walking down a path. For a motorized wheelchair, however, tree roots become river rapids to navigate through with the greatest care.

With each set, Barton would look ahead with a gleam in his eye, formulating how he would navigate through, twisting and turning his wheelchair to match the flat places around the roots of a tree.

Barton was filled with phrases such as: I don’t need any pavement. Who needs sidewalks?

On the other hand, I was filled with: To the left, go left, you got it! Or, we’re idiots (in a nice wifey way). If we get stuck in the storm…

Indeed, off in the distance, thunder echoed. I looked at my phone: the storm would be here in one hour. We picked up the pace, or tried to. Emerging through the wood back onto the path we were familiar with, we took a deep breath.

Barton and Megan- made it in the nick of time.

Barton and Megan- made it in the nick of time.

As we approached the van in the parking lot, rain fell from the skies, waiting to burst. We laughed the whole way home as sheets of water poured down.

Our adventure echoes our life, full of twists and turns that we didn’t expect.

In the year since applying for CTI’s scholarship, Barton has transformed an organization, from the inside out with The Co-Active Accessibility Project. He is coaching clients and working towards completing his certification in the fall. And, I found a position that I love, that stretches me in new ways, where I feel valued and use all of my skills.

We still struggle in the balance of life, to get everything done that we need to, and we have navigated unknown health issues that puzzle and worry us. We are determined to work on finances, even though we get hit with unplanned repairs to take care of, quirky attacks that try to deplete us of resources and energy.

And, we feel closer to each other, with love that crosses oceans and mountains as we look into each other’s eyes.

Truly, it is an Independence Day to celebrate.

Related Posts:
Evolutions in the Co-Active Accessibility Project: A Conversation on Wholeness
Evolutions in the Co-Active Accessibility Project: Honoring the Lens of Challenge
Evolutions in the Co-Active Accessibility Project: Evoke Mutual Inclusivity

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Nurturing Our Relationship: Coming Back to the Source

Barton and Megan Cutter at the NC Museum of Art

By the willow tree. Photo credit: Megan Cutter

Barton and I have been working so hard lately- Barton in building his coaching and leadership practice as he begins CTI’s Coaching Certification Program, and I have been immersed with some immense quarter-end projects in my new position.

It didn’t help that several weekends in a row, we were away from home, as I travelled to Charlotte to attend a CTI Fundamentals course, and we facilitated another workshop in Durham. The laundry piled up on top of the washer and the pile of dirty dishes stacked in the sink.

Needless to say, we’ve been on go-mode. And there was no down time in sight.

It felt like ages since we had done something, anything together, just the two of us.

In an effort to get out more, and connect with our community of friends and writers, I found this Poetry Slam event at the NC Museum of Art. While we reached out to the facilitator to read at the event, we never heard back. So on a whim, we printed out our poems to read and after work on a Friday evening, and headed out to the museum. How disappointed we were when we were told the event was ticketed and sold out.

We stood in the foyer speaking with those who told us we could wait and see if there were any empty seats.

Barton and Megan Cutter at the NC Museum of Art

photo credit: Megan Cutter

But the sun shining through the windows was beckoning us- it was a gorgeous spring evening. And we just couldn’t wait in line in the somewhat dark hall of the museum.

Venturing outside, we meandered down a path by a willow tree and around a pond, with each step sinking into the relaxation and enjoyment of each other.

Both of us became quiet, enjoying the silence and the presence of each other. Walking, hand in hand around this path, the clouds formed an amazing sunset. We took our time, not in any hurry to get anywhere.

We watched as a few families had brought a picnic and commented about how we should do that next time. We passed a few dedicated runners and bicyclists along the way, all finding their way around us.

We breathed deep, let go of all the busyness at home.

barton and Megan Cutter at the NC Museum of Art

Enjoying the sunset. Photo credit: Megan Cutter

How long had it been since we had just stopped to nurture our relationship? Caught in the process of solving issues that needed our attention, figuring out plans/refiguring out plans, working on projects, planning schedules, both dedicated to that never ending to-do list.

This was the time we needed to come back to each other, to find each other again. To be with each other again.

It was a deep breath before going back into the fray of life, and we were reminded of the why of life and they why we are together.

What brings you back to the source?

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Reflections on a Vibrant Community of Coach and Leadership Training

DreamsMy introduction to the Coaching Training Institute (CTI) came through my own coach, where the discovery that some patterns I had held so tightly were affecting my personal relationships. It came in the story that I told myself, that I was never good enough.

My husband Barton was also introduced to the programs through CTI, and embarked on their training curriculum, in addition to serendipitous connections with CTI leaders, and breaking down barriers by introducing the concept of inclusive leadership. I am still profoundly impacted by the connections that were made as we collided with leaders at CTI.

How ironic it was then, that we drove down to Atlanta for Barton’s CTI’s Synergy seminar, attending a special session on creating intentions for the New Year that I was chosen for a weekend of Fundamentals Training. Excited this would be the first training offered in North Carolina, I was filled with joy.

It is rare that I have a weekend without Barton, and even more out of the ordinary that I attend training without my partner in crime. It’s usually by the unified combination of the two of us that makes an impact.

So, a weekend without Barton was a big deal, and takes many logistics on both our parts to make happen. But I have been making some bold leaps independently, including a new position that has stretched me in ways I could not have expected, so it was fitting to take the time to reconnect with training that enhances those skills I need to move forward.

Throughout the weekend, I was most struck by the vulnerability and authenticity that each leader and participant brought and expressed during our time of training together.

As we gave each other permission to coach one another, we allowed ourselves and others the freedom to try new skills, fail brilliantly, recognize our strengths, stretch and tap into the deepest aspects of ourselves. We explored what happened when we try to fix someone else, why that doesn’t work (holding onto our own agenda or outcome), how to listen to what is and isn’t being said, and how to discover questions that reflect what the other person needs to make the connection for themselves.

Outside of the training, I stayed at a place about 10-minutes away, giving myself permission to rest, indulge in a dinner and a movie, and steep myself in silence. Arriving at the hotel, where we were training, a few minutes early, I savored in the time that was just for myself, something spouses/caregivers rarely give themselves.

MeganScotlandFor me, the most profound moment of training came when I heard what others saw as my strengths and gave the time to stretch a strength that I did not recognize by coaching through that lens. The first piece, deeply listening to what others saw as my strengths hit me at my core. I have always denied myself of those positive aspects of myself, believing that who I am is not good enough. Allowing myself to recognize those aspects of myself gives a new opportunity to use them in service.

And the second piece, stretching a strength I did not recognize, pulled me out of my shell. So often I give Barton the recognition, without seeing it in myself. It is a profound moment to recognize the gifts and aspects of oneself autonomously from another. And even after the weekend of training, I am still looking at how to use these skills in new ways.

While I am moving from one-on-one coaching opportunities to working within a full time position, I looked at how these skills apply on a corporate and team level. This gave me the opportunity to reflect and integrate into my new role.

Related Articles: 
Perspectives: Building Inclusive Leadership Through Coaching
Transformation: How Badly Do You Want It?

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On the Road: Vehicle Emergency Preparedness for People with Disabilities

Barton and Megan Cutter drive through flooded waters.

We’ve experienced travel in all kinds of weather conditions. Photography credit: Megan Cutter

Exactly one year ago today, we were preparing for the arrival of our MV-1. Due to the holiday travel, it did not arrive until January 5th. We felt giddy in making lists of we would need for our new vehicle. By mid-month, three snowopolis storms froze the cities of the South, particularly Atlanta and Raleigh. This was not the first time we had conversations about how emergency preparedness related to people with disabilities.

When Katrina roared through Tuscaloosa, Alabama, it was still a Category One. Barton and I huddled in our tiny bathroom with tornado sirens blaring outside. However, over the radio, the Emergency Management System had lost power, so we did not know why the sirens where going off or how long to stay in a safe space. Barton’s wheelchair would not fit through the bathroom doors, so I huddled the tub with our puppy, while Barton sat in his motor wheelchair in the doorway.

accessible vehicle emergency preparedness

Are you ready for the road? Photography credit: Megan Cutter

During the night, while we waited out the storm, we had our first real conversations about emergency preparedness. We talked through every scenario we could think of, and how our actions may be different because he uses a power wheelchair. Of course, the idea behind emergency preparedness is to have these conversations before the emergency.

So it was natural, the weekend we waited for our new accessible MV-1 to be delivered, that we discuss different emergency situations on the road, and began to gather supplies we would need, and where we would keep them in our vehicle.

Here is what every person driving on the road needs to know about emergency preparedness.

1.    Every emergency situation is different.

Consider different ways that you could be in an emergency situation. It could be as simple as a blown-out tire or as complicated as an accident, being stuck in a snowstorm low on gas, or being evacuated because of a natural disaster. What supplies you need or action to take will be dictated by where you are and what is happened around you. While we can’t predict everything that will happen in our lives, looking at short-term and long-term emergency situations will help you prepare.

 2. Communication is key.

Barton has a thick accent due to Cerebral Palsy, and right or wrong, people still have stereotypes about people with disabilities. How you communicate with others what you need becomes vital, especially in situations that are chaotic.

Who else may drive your vehicle? Creating a folder with current insurance information, emergency contacts, or list of supplies can be helpful for direct care personnel or caretakers who are also drivers.

Supplies may include: folder with insurance and registration information, pre-paid mobile phone, ICE (In Case of Emergency) specialized notes on I-phones or I-pads, whistle, air horn, visual aide cards, glow sticks, a quiet seat or corner space (helpful for those with sensory sensitivities to have a calm environment).

3.    Evacuation from Your Vehicle.

What might you need to get out of your vehicle and find a safe space? Supplies are only as good as being able to access them, so think about where you will keep these supplies so you have access to them.

Supplies may include: Seatbelt cutter, window breaker, portable ramp, float vest, rope, maps.

Questions to ask: If you have a motorized ramp, is there manual deployment of the ramp? If a roadway is impassible because of flooding, do you have an alternative route? Many accessible vehicles are lower to the ground. If an accessible vehicle stops in the middle of flooded water or other emergency, what is the best way for you to evacuate?

4.    Medical or durable medical equipment.

Many people with disabilities have specialized equipment. Equipment may come in the form of assistive devices such as walkers or wheelchairs, medical supplies, and medication.

Vehicles have limited space and each person must decide how much supplies/personal information to keep in their vehicle as a back-up.

Some items to consider are: what medical equipment you may need to take with you in an emergency situation, and how long with battery power last (if it runs by motors). Do you have back-up medication, access to doctor and insurance #s, a location or evacuation center that knows about specialized care that you may need?

Supplies may include: back-up power wheelchair charger, electrical or duct tape, wheelchair repair kit, medical kit, first aide kit, back-up medication.

5.    Other Living Emergency Supplies.

When a storm hits, everyone seems to hoard bread and milk at the store. However, are these really the supplies you need? If the power goes out, milk may sour. And you may be wishing for some other food snacks instead.

Maybe you don’t keep all of these supplies in your vehicle. Or you store supplies in different places. Whether it’s in your house or your vehicle, do you have what you need for 3-5 days of living? Or, do you have what you need in inclement weather if you get stuck on the road to keep warm and dry.

Supplies may include: extra pair of clothes and shoes, first aide kit, water, beef jerky, granola bars or other snacks, blanket, hand or feet warmers, poncho, fire-starter, air- compressor, flashlight, matches, multi-utility tool, scissors, marker/chalk, pet food (if you have a pet), emergency fund.

6.    Vehicle Care and Sustainability.

Some emergency situations are avoidable, like running out of gas. We know we should have stopped, but we were in a hurry, and now we find ourselves sitting on the side of the road. It happens to all of us!

Vehicle care may include: filling gas tanks and checking fluids, regular oil changes, regular maintenance. It may also be having a security system or a reminder to lock your doors or having a back-up camera installed for vision.

Additional supplies you may need: jumper cables, oil, tire gauge or fix-a-flat.

7.    Plan, and then throw out your plan.

Life never happens in the way we expect it to play out. Gather supplies and create emergency plans, and then go with the flow. Try to stay calm, and if you find yourself in a stressful situation, remember to breathe.

We have already used one of our emergency tools. One afternoon, Barton’s wheelchair was still on, and the joystick got trapped underneath the shoulder strap seat belt, propelling the wheelchair forward. Barton couldn’t free the joystick, and it became difficult for him to breathe. Using the seatbelt cutter,  we were able to easily free Barton out of this precarious position.

Creating an emergency plan doesn’t happen overnight, and it becomes an on-going conversation that changes with your life. Invite your whole family into the discussion, so that each member knows what to do!

Conversations are not just about preparing for the worst; it’s about having the confidence you need to be independent on the road, so you can be poised for your next adventure!

Social Media in Emergency Recovery and Natural Disasters
WBST Interview- Launch of the MV-1
A Trip of a Lifetime: Speaking at the MV-1 Event
In the Wake of Katrina’s Path

Posted in Megan's Blogs, National Mobility Awareness Campaign, The Nitty-Gritty, wheelchairs, Wild Stories You Just Wouldn't Believe | Tagged , , , , | Leave a comment