One of the things I find most difficult to deal with when it comes to my disability is exhaustion. This morning I sat on my couch and debated whether or not to have my normal green tea -- you see, first there is the long walk into the kitchen, with the option of either standing and waiting in pain while the water boils, or sitting down again and going through the agony of standing again. Then there is the pain of grasping the kettle, because even the smallest weight in my hands just make me ache.
Everyday actions hurt and there isn't a single movement that I can take for granted. When we move the brain sends signals to our body parts faster that we are able to comprehend, but before I move, I have to consciously think about how much pain will result and whether or not said movement is worth the cost. Movement for me is not something I can take for granted, because it always comes with a penalty. There are days when I will spend the day not eating because the effort that it takes to prepare even a simple meal is more than I can handle. I have learned to ignore hunger, because the rumbling of my stomach, is far less painful than the stabbing ache it would create to do something as simple as fry an egg. My children have noticed my eating patterns and have commented that I need to eat more. My oldest has made me peanut butter sandwhiches unasked, because he senses my hunger, but knows that my pride will not allow me to ask more of him than I already do.
During snowstorms like we are currently undergoing, I can feel the eyes of my family upon me. They try to anticipate my needs knowing that taking care of myself is difficult for me. Even the baby offered to attempt to bathe himself this morning, because he knows that bending over to help him wash is agony for me. I know that I am extremely lucky to be surrounded by such love and care, but the emotional heartache of dependency matches the physical pain that I feel.
I posted a video about what it means to walk this week, and I have been thinking a lot about what a state of dependency means in a world in which we are all inter-dependent. Of all the people that I interact with, my family is the least likely to see helping me as an inconvenience. and yet asking for help is something that I find difficult to do. When I arrive at a destination and discover that it is designed to exclude me, thus giving me the option of asking for help or returning home, I become enraged. The very fact that I am forced to ask makes me feel angry and ashamed, because then I become an inconvenience. For me, the problem that arises comes from being told that a sort form of independence, is what is necessary to be able to claim personhood.
Is my dependency on my family, on days extreme pain, any different than the fact that I am dependent on sanitation workers to take away my garbage every week, dependent on people to go to work and ensure that I have hydro and clean water, dependent on the truck drivers to deliver groceries to my grocery store so that I may purchase food? The list goes on and on, and yet the specific shame attached to asking for help in a disabled body is framed as vulnerability. I really believe that this comes from a place of internalizing a disablist attitude to my own body.
What I must learn, is that needing help to perform tasks does not make me less than, because in truth, we all need help with basic functions everyday. The key is to not accept the shame fostered on us by others for asking for help, because this come from a disablist place. The needs of the TAB are only constructed as invisible, because we live in a disablist world. If I must ask for help because an accomodation does not exist, that is not my failing, but the failing of our disabilist world. If I must ask for help because I am having a day of pain that is not my failing, because all bodies fail. For some it may mean a disability and for others it could only mean being bedridden with a nasty flu. The body is an imperfect host and believing that some bodies are impervious to this imperfection because of an able bodied status is disableist.
Today I am going to ask my family when I need help. I am going to struggle not to feel shame when my nine year old does for me what I cannot, because it is time to admit that all relationships require a give and take. When he was helpless, I bathed him, fed him and rocked him to sleep. When he needs help with his home work, I sit by his side and talk him through it. As much as I need him, he needs me, and maybe if more people rethought the meaning of need, we would live in a kinder world.