It is raining today and the damp is causing my fibromyalgia to flare. The moment I opened my eyes this morning, I knew that I would spend most of the day on my back, on the couch. I knew that I would struggle to have a moment without pain. I knew that by the end of day, that my hands and my feet would be swollen and that every step I took would be tinged with pain. I feel the need to say this clearly, because on many occasions, it has been suggested that I got lucky with my disabilities.
Disability is something I am constantly asked to prove to others. It is seen as a free pass to lie around and do nothing and yet they cannot conceive of the pain that forces me to spend the day on the couch. It is one thing to decide to spend the day in pajamas eating ice cream and watching movies, and another to have absolutely no choice in the matter. Even if I were to attempt to push my body for one day to move as able bodied people do, the cost would be a further three or four days completely on my back, as my body responds to the added stress.
The idea that someone staying at home is pulling something over on society, or that we are just too lazy to get out and find a job is simply a ruse to further disempower disabled bodies. The very idea that all we aspire to is to spend our days on the internet or watching bad daytime television, is absolutely ridiculous and yet this myth continues to circulate as a truism. I have been told repeatedly how lucky I am not to have to work, as though getting through each day does not require a mammoth effort on my part. There is little understanding that to sit where I do, one must be in a constant state of pain. Pain surrounds me and envelops my body, taking on a life completely of its own.
The disabled are constantly constructed as lazy for not wanting to, or not having the ability to rise above. The accommodations we need to participate and function in life are seen as asking for special privileges/rights. Even if I were to somehow combat the pain simple movement costs me, society is not organized to be welcoming to bodies like mine. There are businesses that I simply cannot enter because of stairs or no automatic doors. The ones that are kind enough to let me in the front door, are often constructed so narrowly that I cannot negotiate the aisle ways.
Through the pain and the disableism, I am expected to keep a smile and jolly outlook towards life. For me, there is often a crossing of physical disability, depression and rage. I have taken recently to referring to myself as a crippled bitch, because I have moved beyond the point of simply tolerating the disableism quietly. I have finally reached the point where I openly respond to it. I no longer give out cookies to people who fail to be assholes. Perhaps it is because disability is my newest identity, but I have found it harder than any other to find my voice. I firmly believe that this is because we are encouraged to apologize for our very existence, though we have the right to take up space like any other. I don't know where this rage is going, but I know it is real and very much based in how I am forced to move through this world. I know that one day my able bodied tormentors will be able to understand where I am coming from because able bodied status is temporary; however, I simply cannot wait for society to decide that it is okay for me to live and breathe.
It is raining and I have to walk my dog. Anyone with fibro can attest that going out in this weather is painful. Each step that I take my body radiates with pain and by the time I return home, sitting and recuperating is all that I have the strength to do. This is supposedly what I am lucky enough to experience. Capitalism has taught us to attack those that are vulnerable to support the undeserved privilege of the top 1%. People have more value than what they earn and it is only in an unbalanced system that this could be normalized. If those who think the disabled have it so easy were forced to live the life of a differently abled person for one day they would see the world differently. Spending days racked in pain is not a luxury.