I am. Stuff. Etc.
Well, I have been wearing the back brace for hours, I have practiced varied stretches and exercises, I have taken Ultram and Soma... and of course I hurt. I always hurt. I have accepted this so easily. Because it will not change. No matter what anyone tells me.
I do not want to hear people telling me I am or will be normal. Normal is not in my life. Not anyone else's normal. I am a disabled person - excuse me, a 'person with disabilities' (sigh) and I have chronic illness, and chronic pain, and that is that. I treat it. I remedy it. The word 'cure' is far far away from my related vocabulary. If you know me, please leave it be, unless you have discovered something so absolutely powerful and new and wonderful that I absolutely desperately must try it.
Thirty-three years as of April. I have never been normal or okay or cured. And I have never wanted to be normal or okay or cured. I only want to be who I am. I am Joanna, who is a writer, a very short woman, a disabled person with at least two dozen disabilities and illnesses, a person who loves cats, a polytheist polyagnostic pantheistic eclectic pagan who talks to nature like a friend.
Some disabled people advocate for not allowing disabilities to 'define' them or 'be part of them' - and I have realized that my disabilities and illnesses are such an intense part of what affects my life that they may as well define at least part of me. I am a person. And I am disabled. I am a disabled person. And you know what?
At least for now I do not want to put my personhood before my disability status because I am exhausted by so much screaming social justice in every nook, cranny, and corner. We cannot say this, we must say that. Oh, we would offend those people whom we are not part of. There are allies, there are advocates, and then there are those of us who are actually affected. And some of us just don't care.
People are people, they will always be people.
But I am not going to trip over my tongue, which is just one of the many many muscles affected by cerebral palsy, trying to politely say "I am a person who has multiple disabilities and chronic illnesses" when I can just say "I am disabled and chronically ill." Look. Everyone else can say what they wish about themselves. I am disabled, a cripple, a gimp, lame, weak, incapacitated, mentally ill, neurologically ill, crazy. I will not use those words to describe anyone but myself. I will not be offended if I am called one of those words. Whatever. You know? I know who and what I am, and I am fine with that. (Although I do not like the word 'retarded' being used in place of 'stupid', not at all. It means 'stunted growth' and that is how it should remain. So, you know, stop doing that.)
But lame? I'm fine with being called lame. Weak, unbalanced, slow. Sure. That is what it means. But privately,
I really believe that some people are getting too wrapped up in all this vocabulary attached to ableism and such. Social prejudice is... very, very tricky. Full of eggshells. But if you are not sure if something you say is ableist... you could always ask.
I have no idea why I typed all of that. But I have been told, over and over, to be 'more PC' about my own personal disabilities. Fuck that. I'm a fucking crazy lame spastic cripple. You are not those things, (probably), and please be proud of that. I would never call you that (unless you want me to, who knows, maybe you do? I'm not in your head and you are not in my head).
(Example: I call myself lame, and someone screams, "Oh my god, that's ableist!" and I calmly reply, "I'm permanently disabled and actually literally lame, because one leg is shorter, and I limp, so whatever." And they shut the fuck up, because what else can they say?)
So I suppose my point is that my mind is mine, my body is mine, my disabilities and illnesses are mine. And they have nothing to do with what sort of words you want to to use to describe me.
So. Thank you? I guess?
I do not want to hear people telling me I am or will be normal. Normal is not in my life. Not anyone else's normal. I am a disabled person - excuse me, a 'person with disabilities' (sigh) and I have chronic illness, and chronic pain, and that is that. I treat it. I remedy it. The word 'cure' is far far away from my related vocabulary. If you know me, please leave it be, unless you have discovered something so absolutely powerful and new and wonderful that I absolutely desperately must try it.
Thirty-three years as of April. I have never been normal or okay or cured. And I have never wanted to be normal or okay or cured. I only want to be who I am. I am Joanna, who is a writer, a very short woman, a disabled person with at least two dozen disabilities and illnesses, a person who loves cats, a polytheist polyagnostic pantheistic eclectic pagan who talks to nature like a friend.
Some disabled people advocate for not allowing disabilities to 'define' them or 'be part of them' - and I have realized that my disabilities and illnesses are such an intense part of what affects my life that they may as well define at least part of me. I am a person. And I am disabled. I am a disabled person. And you know what?
At least for now I do not want to put my personhood before my disability status because I am exhausted by so much screaming social justice in every nook, cranny, and corner. We cannot say this, we must say that. Oh, we would offend those people whom we are not part of. There are allies, there are advocates, and then there are those of us who are actually affected. And some of us just don't care.
People are people, they will always be people.
But I am not going to trip over my tongue, which is just one of the many many muscles affected by cerebral palsy, trying to politely say "I am a person who has multiple disabilities and chronic illnesses" when I can just say "I am disabled and chronically ill." Look. Everyone else can say what they wish about themselves. I am disabled, a cripple, a gimp, lame, weak, incapacitated, mentally ill, neurologically ill, crazy. I will not use those words to describe anyone but myself. I will not be offended if I am called one of those words. Whatever. You know? I know who and what I am, and I am fine with that. (Although I do not like the word 'retarded' being used in place of 'stupid', not at all. It means 'stunted growth' and that is how it should remain. So, you know, stop doing that.)
But lame? I'm fine with being called lame. Weak, unbalanced, slow. Sure. That is what it means. But privately,
I really believe that some people are getting too wrapped up in all this vocabulary attached to ableism and such. Social prejudice is... very, very tricky. Full of eggshells. But if you are not sure if something you say is ableist... you could always ask.
I have no idea why I typed all of that. But I have been told, over and over, to be 'more PC' about my own personal disabilities. Fuck that. I'm a fucking crazy lame spastic cripple. You are not those things, (probably), and please be proud of that. I would never call you that (unless you want me to, who knows, maybe you do? I'm not in your head and you are not in my head).
(Example: I call myself lame, and someone screams, "Oh my god, that's ableist!" and I calmly reply, "I'm permanently disabled and actually literally lame, because one leg is shorter, and I limp, so whatever." And they shut the fuck up, because what else can they say?)
So I suppose my point is that my mind is mine, my body is mine, my disabilities and illnesses are mine. And they have nothing to do with what sort of words you want to to use to describe me.
So. Thank you? I guess?