A painting by Patrick Sean Kelley entitled “Two Faces of One Day.”
As a paralyzed person who gets around in a wheelchair, I live on the invisible fringe of our society. Sometimes I forget this. Right now, I am flying over the Atlantic Ocean and thinking about two encounters that have served as reminders of my position. I am returning from six days of teaching yoga in London. I taught a three-day yoga teacher training on trauma, PTSD, its effect on subtle body, and how yoga can help people heal. I also taught three days on yoga and the sensation of unity.
After the second night of teaching, I am waiting outside of Triyoga in Camden. My taxi is late. As a person in a wheelchair, I am not a desirable pick-up, especially because the ride is not a great distance. My friend Jonathan is calling and recalling the cab company, trying to hurry them along. At one point, I am sitting alone, on a corner of an alley, waiting quietly. I suppose I might have been a slightly odd site: a guy sitting alone in a wheelchair, facing outward, gazing nowhere in particular, in the relative dark.
A car pulls up and parks a little distance away. A family gets out and walks past me on the deserted street. The driver is lagging behind but starts walking a line coming straight at me. It feels a little strange, but I figure he is a family man. He walks by; we make eye contact; everything seems fine. He looks of eastern European descent, maybe Albanian. Then he stops, pivots, and starts to walk back toward me. I go on alert, not scared, but only alert because his steps feel gentle. We make eye contact as he approaches. He reaches out his hand and offers me money. Surprised, it takes me a moment to realize what is happening. After a slight pause, I tell him, “No, I’m good…thanks.” He shrugs his shoulders, turns, and says, “Okay,” and starts to walk off. I smile with disbelief. This is the first time in the thirty-seven years I have been injured that I have been confused with someone who is down and out. The man takes a few steps away, stops, turns, and says through a thick accent, “You sure?”
However misplaced, I am encountering a tender point in this man’s conception of humanity. He sees the scene in front of him; he interprets; he feels; and he decides to act in the moment by offering money. Perhaps he has a disabled relative. Perhaps he knows from experience how hard it is to navigate London in a wheelchair. Perhaps he just feels sympathy for what he does not know. Anyway, I am not offended. With receptive kindness in my voice, I reiterate, “No, I’m good…really.” When Jonathan returns, I ask him, “Do I look like a panhandler?” I motion to my kaki pants and red rain jacket and say, “Am I missing something here?” We have quite a laugh. It also made for a great story the next day for the people I was teaching.
My other encounter happens when I board my nine-hour Delta flight back to Minneapolis. I am put on the plane first as I need to transfer to an aisle chair and then be helped by two attendants to navigate the impossibly narrow aisle. In the quiet before the storm of general boarding, I tell the Minneapolis-based flight attendant that I will need some help during the flight. I cannot get to the bathrooms, and even if I could, they are so small that they make transferring into them impossible. I tell her that mid-way through the flight, I will catheterize my bladder in my seat. The urine will go into a bottle and could she empty it for me? I tell her that I will be discrete and it will be simple. I say this with confidence as I have gone back and forth to London six times and never had a problem. She gives me a vague nod and leaves.
So starts the show. Soon another flight attendant solemnly sits next to me and asks me about my request. She informs me impassively that she will comply with what I need. Her wife recently had a hysterectomy and had to use an indwelling catheter so she understands what I ask. But she also tells me that my request is beyond the scope of a flight attendant’s job. They are required to help me gain access only to the door of the bathroom by using an in-flight aisle chair. (This scenario would take a lot of effort for everyone involved.) If I need anything beyond that, it is my responsibility and I should be traveling with a companion. On an exhale she says, “But I will help.” She leaves.
Then the gate agent comes. He too asks me about my request. He needs to confirm that I am asking for something I cannot do. I tell him that all I am requesting is that someone walk down the aisle of an inaccessible plane, into an inaccessible bathroom, and empty a bottle of warm liquid into the toilet….there will be no mess. He shrugs helplessly. He is caught between a rock and a hard place. He sees the simple nature of my request, but he is not a flight attendant on the plane and cannot be the one who actually helps me. With a grave expression on his face, he says, “I will have to call headquarters.” I can tell that Delta is considering not letting me stay on the flight.
The gate agent returns. He has a look of relief on his face. He tells me that he has found a flight attendant that has agreed to take the tenuous journey down the aisle with the completely contained toxic liquid. He looks a little sad and informs me that Delta is only required to get me to the bathroom door. Beyond that, I would normally need to buy a companion ticket (about $1500). Today, however, they will help. I ask him about the other eleven Delta flights I have taken and been helped without question. He looks down and ashamedly says, “This is a different crew.” He leaves.
Again, for the second time in a week, I sit in disbelief. This time I am not laughing. I am hurt. I have been pushed to the invisible fringe. At first, I am angry. I consider not teaching people in Europe anymore. Then I try to understand. I get why the rule is the rule. Where would Delta draw the line? My request is relatively simple. But what if someone else had a colostomy bag or needed a flight attendant to give an injection. They have to draw the institutional line somewhere. Their rule must cover all cases. My situation is subject to the humanity of individual flights attendants. I feel humiliated.
I am strong, able, and willing to deal with this society while living on the invisible fringe. This is not the case for many people living with disabilities. It hurts to be pushed to the fringe. So they don’t fly, let alone across the Atlantic. I may be tough but today’s encounter leaves me deflated. I definitely feel the “outsider”….the one who not only doesn’t belong and but also isn’t completely wanted.
I end up solving my own problem. I have a bottle of water in my backpack that has a lid. I will ask the flight attendant to empty the acceptable fluid. My plan is to cath myself in my seat, into this bottle, put a lid on it, and carry my own water off this plane. I will grit my teeth and ask for no help. We all lose.