In addition to the physical disability, I also have been diagnosed with an ‘unspecified anxiety disorder’ and have endured anxiety attacks. This morning I could feel an anxiety attack building and I shared the way I was feeling with my husband. To say he didn’t respond well, would be an understatement.
My husband has been planning for he and I to make a trip to our local shopping mall, to do some Christmas shopping and to spend the day together. We used to make a whole day of Christmas shopping, even stopping to have lunch together. It was a wonderful experience, but since I became disabled and require the use of a power chair things have changed.
I don’t have a way to transport my power chair, other than to use the city bus. This, for me, is an ordeal, so I don’t take advantage of this form of transportation, though my husband doesn’t see the problem.
To use the city bus, when the bus stops to pick me up, they have to put a ramp down, then the driver has to get up, ask anyone sitting in the area used to ‘tie down’ wheelchairs to get up and move to another seat, then I have to get my chair up the ramp and into the bus, making a tight sharp turn between two poles, next to the machine that dispenses passes, I always get hung up making this turn, as my leg rests get caught. Once in the bus I have to maneuver into the aisle and turn the chair completely around, pulling it up against the outside wall of the bus as close as possible. I have run over the feet of other passengers before because their feet were sticking out in the aisle and my back tires caught their toes. The bus driver has to use ‘tie-downs’ to secure my chair so if the bus stops suddenly, my chair doesn’t roll forward or backward.
After all that, the driver can go back to the wheel, retract the ramp and proceed to our destination. Once we arrive, they unload the bus, the driver tells the people waiting outside to board the bus that they can’t get on yet and then the driver removes the tie-downs from my chair and I’m able to go back down the ramp.
In the past I’ve had difficulty getting up the ramp, if the sidewalk is uneven or the curb is especially high, the ramp they put down can be steep, preventing my chair from making it onto the ramp without help. I’ve had to back up and get a ‘running start’ at the ramp to make it up and in doing so have backed into someone standing too close to the back of my chair. I’ve had an equal amount of difficulty getting off the bus, as people waiting to board the bus, when I’m trying to disembark, crowd the end of the ramp, so I can’t smoothly transition from the ramp to the sidewalk.
One city bus had a wheelchair lift, which the driver put me and my chair on and discovered it wouldn’t work. It was raining, so I was getting wet while they tried to get the ramp to go up, this caused a delay which made the bus about 15 min. behind schedule, a number of people got off the bus, while complaining, and transferred to another bus. I was so embarrassed.
I’ve experienced bus drivers who complain that my ‘wide body’ wheelchair is a problem, as it sticks out in the aisle too far, making it difficult for passengers to get past me. I know it’s hard on folks, as I get elbowed, slapped with coats and packages, in the face and shoulder as people push past my chair.
As someone who is morbidly obese AND disabled I feel I’m always on display, always a spectacle when I’m in public (I’ve had strangers comment on my weight, that I’m using a power chair, etc.), I’m always in someone’s way, inconveniencing others.
Yes, I know, I have as much right as anyone else to shop, use public transit, etc., that’s really not the problem and it’s really not about the nasty things people say or the stares, pointing fingers, or laughter aimed at me, it’s really about how I feel about being a public spectacle or the center of attention.
I’ve told my husband many times how I feel about this, that using the bus is just such an ordeal for me, how much I really dislike it. I get sick to my stomach just thinking about it, the closer we get to catching a bus, seeing it coming down the street toward us, I feel like I could throw up, I want to cry, my neck tightens up and my head starts to hurt. When the bus stops I feel like I can’t catch my breath.
This morning as we approached the bus stop I mentioned to my husband that I felt sick to my stomach. He was very short with me, he told me it was ridiculous. As I tried to explain how I was feeling he told me we should just go home. He was angry and frustrated. The more I tried to explain to him how I was feeling, hoping he would understand, the more upset he got with me.
It didn’t take long for the tears to start. I was so disheartened, as I realized if my husband who has gone through all of this with me doesn’t understand, how could I expect strangers to understand?
I feel sometimes like I can’t win in situations like this. If I don’t share how I feel about going, I’m told I need to speak up for myself and to not do things that are uncomfortable for me… if I do share how I feel I’m preventing others from doing what they want and I’m being ridiculous.
My husband told me I should just ignore what other people say, if they stare at me, etc. that I have a right to go places and do things and having been an advocate I shouldn’t have a problem with that, but he didn’t get it, I do think we have a right to go where we want and to do the things we want, regardless of our disability, what I have a problem with is what feels like ‘special treatment’, being an ‘inconvenience’, etc., being the center of attention.
Those feelings have to do with my own feelings about being morbidly obese, disabled, using a power chair. Those feelings are about my own insecurities. The things I fear when out in public are not, as my husband suggested, psychosomatic, they are very real.
We didn’t go on the bus this morning, we came home and put my chair in the house, got in the car and went to a store to shop where I could use the electric “mart cart”.
We talked more than once today about this anxiety and about whether the expectation my husband has is that I just remain quiet and ‘go along’ to keep the peace or if he expects me to be honest and share how I’m feeling with him. I talked to him about the way he has ignored me when I’ve tried to share this anxiety with him in the past, about how I’ve ‘gone along’ so that others didn’t have to avoid activities they enjoyed, like going to an amusement park, where I get to just sit and watch everyone having a good time, often not even able to look in shops because a scooter or power chair doesn’t fit easily in the aisles of the little shops.
He concluded, “I just don’t know…”.
I know to someone who doesn’t live with my physical limitations and doesn’t have the emotional issues I do having an anxiety attack about getting on the bus with my power chair seems stupid and ridiculous, but that doesn’t make it any less real or debilitating to me.
I hope that in time, I won’t be so seriously impacted by things like this, but right now, today… I think it’s important for me to protect myself from unnecessary stress and anxiety, so I speak up. I also have to hope in time, my husband and those closest to me will learn to understand how I feel and why.