On disability pride and how I see myself
Authors Note: I am leaving this post public because I truly want to know what people think. Disabled or not, please comment with your 2 cents on the matter and feel free to share with anyone you think might be interested. Cut to save your flist page my looooooong rambles.
The other day, amigone and I were in the car and she saw a bus ad for some disability related thing to do with disability pride. It was just a tiny slice of our day, but it really got me thinking. I told her that I understood and valued the concept but wasn’t sure that pride was really the right word for it. I don’t quite see my disability itself as something to be proud of. It would be like being proud that my eyes are brown or that I’m a short person who is five foot one if I’m standing up really straight.
karalianne has a post on her blog about how she choose to define herself in terms of disorder, which I was rereading today in an effort to clarify my thoughts on the subject. In it she states that she uses the short hand that she is ADD rather than she has ADD, in order to reflect that her disorder is a fundamental part of her identity. After she makes that statement, she then acknowledges that many people say you should never say you are your disability, only that you have it. She then makes the point that others don’t get to decide how she chooses to describe herself, regardless. You can read her whole post here: http://jannalouise.thehoskincentre.com/blogs/asd/2010/09/16/my-disorder-does-not-define-me/ if you are interested. Both the post and the comments are interesting and insightful. In reading it, I found myself nodding because I also see my disability as absolutely vital to the development of who I am today. And also, like her, I firmly believe that as much of an influence having cerebral palsy has had on me, it is far from the only one. My parents, family, education, friends, and spirituality have had as much to do with forming me as anything.
But, when I re-read the whole post again, I had to disagree with the basic point. I have never introduced myself by saying, “Hi. I’m Josie, I’m CP.” Perhaps it is a function of the differences between having a disorder that impairs mental functioning, and having a disability that impairs mobility. I am only speculating of course, and I should state here that I have no problems with any way any of my friends choose to present the myriad of disabilities and disorders they have. Heck, there are days when I think it would be easier to just announce it right off the bat that way, simply to save the questioning looks or outright gawking I often get from those who are too shy or too ignorant to simply ask me. As Janna points out in her post, how I refer to my friends depends on what they may have asked of me. If I don’t know, then I err on the side of caution and say that they have whatever disability or disorder applies.
I try my very best to be respectful of any differences when it comes to my circle of friends, and there are quite a lot of them. Whether it is labels to do with disability, sexual orientation, religion and spirituality or gender, I am a big believer in the idea that each person should have the right to define themselves as they choose. Since that is the right I expect for myself, how can extend less to those I care about? Generally, I tell people who ask me that I have cerebral palsy. If I know them better, or have reason to know they would understand, I explain I have spastic diplegia. Those I’m especially close to know all about the other issues that invited themselves to the CP party and have now come along for the ride. Conversely, for those I don’t know well, and don’t expect to, I simply say I am mildly mobility impaired and leave it at that.
Given a choice, one of my fondest wishes is that I wouldn’t have to explain it at all, that it could be as irrelevant to meeting new people as whether or not I eat liver, or am right handed or any other facet of my personality. It’s not that I am ashamed of being disabled, far from it in fact. I make no apologies for the person I am, because I quite like myself. But, it is difficult to have all of my accomplishments measured against that particular facet of me. For example, often times when I am meeting people, the fact that I have a degree comes up. Most of the time, the well intentioned individual I am meeting then says something like “You have a degree, that’s so cool. It must have been so hard for you.” I’m paraphrasing from numerous conversations, but I am sure you get the idea. As much as I appreciate the compliment, I would rather get it simply on the basis of accomplishment, not on the basis of accomplishment in spite of a disability I have never lived without. Getting a degree was extremely difficult at times, but as far as I have been told, it is difficult for everyone.
Still, I live in the real world (most of the time), so I am fully aware that I can’t ask people to separate me from my disability any more than I can do that myself. In practical terms, those involved in my day to day life do need to know some of the details of my disability in order to understand the basic limits I (usually) have to live within. Pushing my limits is a whole separate issue, so I won’t get into that here, but explaining the Spoon Theory helps friends understand when I have to opt out, or can’t pre-plan, or happen to bring along a large furry dog, or whatever disability related thing is relevant in any given day.
I am many things: a woman, a wife, a sister, friend, aunt, bookworm, heck, even a bit of a geek. But none of those labels on their own sum up who I am and none of them ever will, because each of those labels and what they mean to me changes as I grow and evolve as a person. More importantly, each label is only a small slice of the whole pie. Why should my disability be any different? It really is no more or less a part of me than any label you might pick to describe me. Sure, having cerebral palsy may have had a profound impact on me, on how I see the world, and interact with people. Some of that is a good thing. It has made me stronger, more open minded and much more accepting than some. Unfortunately, it has also seen me judged by others before I even open my mouth, ridiculed, even physically assaulted by those who didn’t understand anything except that I was different, and therefore deserving of any abuse they might dish out.
If I am being totally honest, I am not sure that if I was given the choice, I would choose to go through life as a disabled woman. I know that the societal norm is to say of course I would, and be the inspiring, ever-cheerful, but disabled hero type. The reality is, a great deal about living with my particular disability is frustrating, annoying and at times, extremely painful both physically and mentally. The medical parts of life are very complicated, even on a good day. Though I now consider all my issues well managed, that wasn't always the case, especially during the Let's Tell Josie She Has MS On Top Of Everything Else fiasco some of you might remember from several years ago. On the flip side of the coin, having cerebral palsy has led me to some truly amazing people I am proud to call friends, and enhanced my character in ways I believe make me a much more patient, loving, and open minded person. I guess there has to be an upside to everything. But who’s to say I wouldn’t have been all of those things anyways? At the end of the day, being proud of being disabled doesn’t make sense to me because I didn’t choose it. I am proud of the things I have accomplished in spite of it, and will continue to achieve in the future. For many people, that is what having pride in your disability is about, I think. Realistically, despite all the thought I have been putting into this subject lately, the basic framework of how I view the issue won’t change. I’m not going to wake up tomorrow magically cured and able bodied, though hopefully by Sunday Botox will have kicked in and I will be feeling better. Heck, I don’t even think I am going to wake up after a few more days of thinking this through with a more conclusive answer about how disorder or disability labels should work. Perhaps in this case the old cliché is true and it is more important to ask the question than to come to any firm answer. Just because as I sit here typing this I can say that my disability is only a part of what make me so uniquely fantastic, and thus doesn’t completely define me doesn’t mean that a year from now you won’t see me walk up to someone and say “Hi, I’m Josie, and I’m CP.” Stranger things have happened.
Then again, perhaps my view of this whole thing would be different if I was more active in the disabled community and culture. I am on my way to joining several associations related to my labels because I think that I will grow as a person, get some support, and hopefully be able to lend my knowledge. Whether that translates to better understanding of this particular issue remains to be seen. Previous forays into the community always seemed to be tainted by the view that I wasn't CP enough, but that is a whole other issue, so again, I won't go there today. Still, I look forward to getting more perspectives about this from those I meet in future. And speaking of other perspectives, what do you think, readers?
The other day, amigone and I were in the car and she saw a bus ad for some disability related thing to do with disability pride. It was just a tiny slice of our day, but it really got me thinking. I told her that I understood and valued the concept but wasn’t sure that pride was really the right word for it. I don’t quite see my disability itself as something to be proud of. It would be like being proud that my eyes are brown or that I’m a short person who is five foot one if I’m standing up really straight.
karalianne has a post on her blog about how she choose to define herself in terms of disorder, which I was rereading today in an effort to clarify my thoughts on the subject. In it she states that she uses the short hand that she is ADD rather than she has ADD, in order to reflect that her disorder is a fundamental part of her identity. After she makes that statement, she then acknowledges that many people say you should never say you are your disability, only that you have it. She then makes the point that others don’t get to decide how she chooses to describe herself, regardless. You can read her whole post here: http://jannalouise.thehoskincentre.com/blogs/asd/2010/09/16/my-disorder-does-not-define-me/ if you are interested. Both the post and the comments are interesting and insightful. In reading it, I found myself nodding because I also see my disability as absolutely vital to the development of who I am today. And also, like her, I firmly believe that as much of an influence having cerebral palsy has had on me, it is far from the only one. My parents, family, education, friends, and spirituality have had as much to do with forming me as anything.
But, when I re-read the whole post again, I had to disagree with the basic point. I have never introduced myself by saying, “Hi. I’m Josie, I’m CP.” Perhaps it is a function of the differences between having a disorder that impairs mental functioning, and having a disability that impairs mobility. I am only speculating of course, and I should state here that I have no problems with any way any of my friends choose to present the myriad of disabilities and disorders they have. Heck, there are days when I think it would be easier to just announce it right off the bat that way, simply to save the questioning looks or outright gawking I often get from those who are too shy or too ignorant to simply ask me. As Janna points out in her post, how I refer to my friends depends on what they may have asked of me. If I don’t know, then I err on the side of caution and say that they have whatever disability or disorder applies.
I try my very best to be respectful of any differences when it comes to my circle of friends, and there are quite a lot of them. Whether it is labels to do with disability, sexual orientation, religion and spirituality or gender, I am a big believer in the idea that each person should have the right to define themselves as they choose. Since that is the right I expect for myself, how can extend less to those I care about? Generally, I tell people who ask me that I have cerebral palsy. If I know them better, or have reason to know they would understand, I explain I have spastic diplegia. Those I’m especially close to know all about the other issues that invited themselves to the CP party and have now come along for the ride. Conversely, for those I don’t know well, and don’t expect to, I simply say I am mildly mobility impaired and leave it at that.
Given a choice, one of my fondest wishes is that I wouldn’t have to explain it at all, that it could be as irrelevant to meeting new people as whether or not I eat liver, or am right handed or any other facet of my personality. It’s not that I am ashamed of being disabled, far from it in fact. I make no apologies for the person I am, because I quite like myself. But, it is difficult to have all of my accomplishments measured against that particular facet of me. For example, often times when I am meeting people, the fact that I have a degree comes up. Most of the time, the well intentioned individual I am meeting then says something like “You have a degree, that’s so cool. It must have been so hard for you.” I’m paraphrasing from numerous conversations, but I am sure you get the idea. As much as I appreciate the compliment, I would rather get it simply on the basis of accomplishment, not on the basis of accomplishment in spite of a disability I have never lived without. Getting a degree was extremely difficult at times, but as far as I have been told, it is difficult for everyone.
Still, I live in the real world (most of the time), so I am fully aware that I can’t ask people to separate me from my disability any more than I can do that myself. In practical terms, those involved in my day to day life do need to know some of the details of my disability in order to understand the basic limits I (usually) have to live within. Pushing my limits is a whole separate issue, so I won’t get into that here, but explaining the Spoon Theory helps friends understand when I have to opt out, or can’t pre-plan, or happen to bring along a large furry dog, or whatever disability related thing is relevant in any given day.
I am many things: a woman, a wife, a sister, friend, aunt, bookworm, heck, even a bit of a geek. But none of those labels on their own sum up who I am and none of them ever will, because each of those labels and what they mean to me changes as I grow and evolve as a person. More importantly, each label is only a small slice of the whole pie. Why should my disability be any different? It really is no more or less a part of me than any label you might pick to describe me. Sure, having cerebral palsy may have had a profound impact on me, on how I see the world, and interact with people. Some of that is a good thing. It has made me stronger, more open minded and much more accepting than some. Unfortunately, it has also seen me judged by others before I even open my mouth, ridiculed, even physically assaulted by those who didn’t understand anything except that I was different, and therefore deserving of any abuse they might dish out.
If I am being totally honest, I am not sure that if I was given the choice, I would choose to go through life as a disabled woman. I know that the societal norm is to say of course I would, and be the inspiring, ever-cheerful, but disabled hero type. The reality is, a great deal about living with my particular disability is frustrating, annoying and at times, extremely painful both physically and mentally. The medical parts of life are very complicated, even on a good day. Though I now consider all my issues well managed, that wasn't always the case, especially during the Let's Tell Josie She Has MS On Top Of Everything Else fiasco some of you might remember from several years ago. On the flip side of the coin, having cerebral palsy has led me to some truly amazing people I am proud to call friends, and enhanced my character in ways I believe make me a much more patient, loving, and open minded person. I guess there has to be an upside to everything. But who’s to say I wouldn’t have been all of those things anyways? At the end of the day, being proud of being disabled doesn’t make sense to me because I didn’t choose it. I am proud of the things I have accomplished in spite of it, and will continue to achieve in the future. For many people, that is what having pride in your disability is about, I think. Realistically, despite all the thought I have been putting into this subject lately, the basic framework of how I view the issue won’t change. I’m not going to wake up tomorrow magically cured and able bodied, though hopefully by Sunday Botox will have kicked in and I will be feeling better. Heck, I don’t even think I am going to wake up after a few more days of thinking this through with a more conclusive answer about how disorder or disability labels should work. Perhaps in this case the old cliché is true and it is more important to ask the question than to come to any firm answer. Just because as I sit here typing this I can say that my disability is only a part of what make me so uniquely fantastic, and thus doesn’t completely define me doesn’t mean that a year from now you won’t see me walk up to someone and say “Hi, I’m Josie, and I’m CP.” Stranger things have happened.
Then again, perhaps my view of this whole thing would be different if I was more active in the disabled community and culture. I am on my way to joining several associations related to my labels because I think that I will grow as a person, get some support, and hopefully be able to lend my knowledge. Whether that translates to better understanding of this particular issue remains to be seen. Previous forays into the community always seemed to be tainted by the view that I wasn't CP enough, but that is a whole other issue, so again, I won't go there today. Still, I look forward to getting more perspectives about this from those I meet in future. And speaking of other perspectives, what do you think, readers?