Able Fragility Part Three: Example
And now, after all of that buildup...the example.
Because disability is only something that we are as a culture really beginning to engage with--and not very well at that--it might be easy to read what I have written, and feel like I'm describing something really trivial or not very hurtful. If it feels like I'm overreacting to things, I would ask you to sit with what I've written for awhile afterwards and ask yourself if it is possible that the reason it feels minimal, is simply that you haven't heard much about it. That simply, its not on an axis of your experiences and the things that seem important to you because our experiences have been minimized and often paternalized.
It is very important for me to say here that though this example could serve as a template for many conversations I've had over the years with people in academic, employment, or social power over me, in this instance (or more accurately iteration) of this type of conversation, the individual had none of these. The person involved also, I need to be clear, likely had the best of intentions and meant no harm. Also I should be clear that I am using paraphrases, since without direct permission to use their words, I don't feel like I should quote directly.
But the thing is, when people experience hearing the same things over and over regarding their very being and experience, it is like having to sit still while people continually reopen a wound. It never quite gets the opportunity to heal, or if it starts to, someone else comes along and rips it open again.
It starts with a small request on my part that others were also making. For particular reasons, the individual chose not to grant the request in my case, even though they had with others. The funny thing is, if the person had just said, "I'm not comfortable with that" even though all of the unexamined ableism contributing to that discomfort would still likely have been under the surface, I would not have paid it any attention.
Rather, though, the person sent a rather long and condescending-feeling message whose central point involved the invocation of that thing many disabled people are so sick of hearing, that we are asking for an "unfair advantage".
To be clear, though the words unfair advantage appear on a few lists of microaggressions used on disabled people (or PWD's), it doesn't appear on many. Someday, though, I hope that it will be commonly known and realized as a microaggression. Having your legitimate needs and/or asks, that you are already in this culture scared to ask to have met, continually dismissed and gaslighted in this way repeatedly is harmful.
When I first got the message, I started to feel really bad, and I couldn't articulate why until I realized. Every time this comes up, it is in the context of an unfair advantage over able-bodied people. It shames us for having needs that we have to ask to have met, or even sometimes for just having wants.
It also invokes another stereotypical thing that we are often told, that we are lazy and should just work harder (my own rendering of common arguments and underlying themes: like those able-bodied people over there, you don't see them needing or wanting all this extra stuff and complaining do you? Why can't you just be like them?).
So, I sent back a carefully worded message starting with compliments towards the person, and trying to move the conversation off of the personal (after a quick description of my past as someone who lives with a disability and my experiences) and onto the systemic issues at play.
And here is where the Able Fragility comes in. As I mentioned before, everything will be paraphrased and I will try to make clear what is my own interpretation and what stems from the prototypical conversation. In essence, each section of this person's prototypical response to my gentle request for a change in how they think about things and react to things, will be paraphrased into a topical heading and discussed.
Paraphrase #1) "No, its really not about disability"
In White Fragility, Robin DiAngelo speaks to the often used tactic of taking race off of the table, denying that anything racist could have happened. Denying the reality and lived experience of the person experiencing the racism at their hands. This also ties into what she speaks of, in the often used White Fragility tactic of placing the intent of the action and/or words as the sole measure of racism, rather than the outcome and the effect on the person.
Often used phrases she describes used by White people include "I didn't intend it" (therefore it can't be racist). It's not racist because I'm not racist. (I get to decide what's racist even though I don't live it and experience it in the same way you do).
In this case, they tried to establish their right to decide whether or not it was disability related or not. When you use a phrase towards me that is often used to silence and shame me for the legitimate needs that I have with the body I've been given, you don't get to decide that it is or isn't about disability. I live it every day.
Your intentions in this case have no bearing on the effect it has on me. Remember the endless stream of paper cuts analogy above. You opened up a disability related wound for me. It is about disability, and you don't get to pretend like it never happened, minimize, or pretend like I'm making too big of a deal about a small thing, or remove the focus from the subject at hand to the small nature of the request I was making.
Paraphrase #2) "You insulted me by bringing up your experiences and asking me to act differently in the future"
Again, Robin DiAngelo speaks in White Fragility of the fact that white people often feel insulted or attacked when they have their racism and racist acts brought to their attention. Notice that in this case, even though this person's words had a very real and harmful impact on me due to previous shaming that has been going on since childhood, my gently bringing this to their attention results in the statement that my attempts to address my hurt is insulting to them.
This begins the process of centering them and their feelings and personhood over and above my own. In asking this person to treat my own feelings and needs as important, I have asked this person to treat me as an equal. But that is somehow insulting and intolerable, and so the power needs to be shifted to them. I need to be reminded that my job is to make sure they are comfortable at all times and that they should not be reminded of their ableism or things they could do to address it.
Paraphrase #3 "I have a condition, too, but I don't talk about it."
Though the snarky side of me feels like wondering if they have a tendency to mention their Black friend when they are engaged in conversations relating to race (because of course having a Black friend means you could never be racist or engage in racism or racist systems), I will put aside the snark for now. Though the same implication comes loudly through. Your experience is invalid because I already have all the experience and knowledge needed on the subject. And I get to be the judge of yours. And I find yours wanting.
Robin DiAngelo does mention this seeming appeal to inside knowledge as a tactic white people use for deflecting real concerns regarding racism they have. Though here, this functions in a way particular, I feel like, to ableism. Though it shares the claim that they obviously need no more education on this topic, even though the fact that you're having this discussion with them clearly indicates that they haven't had the experiences you have had or to the level that you have had and that actually, there is some education on the subject that they still need.
But to get to the insidiously ableist part of this response, which is always accompanied by the "I don't talk about it", there isn't just the implication that I already know everything there is to know on this topic, there is a dual implication. The first implication being that you should and could be functioning as well as they are if you just shut up and tried as hard as they did.
The second implication is, whatever you go through with your disability, you should just shut up and go through it and any advocacy or speaking out about your experiences is just attention seeking and excuse-making (both of these especially when the person making the claim functions in an able-bodied manner and both know that the person trying to address the ableism does not; even moreso if the person with the disability has an invisible condition). It is in affect, an admonishment to silence.
But let's even delve a little deeper here, because the "I don't talk about it" serves another function too. t serves to make it clear that you are not allowed to ask what their condition is to see if there is any level of similarity in your experience in which to engage. Not only does it serve to try to silence you in the here and now, across the board, but it also silences you from being able to see from what perspective and with what experience they are claiming to speak from.
In terms of the harm done from this whole conversation, this one had to be the worst. I have a lifetime of shaming and denying the experience of my body when I tried to do as much as everyone else did and ended up needing so much recuperation time and failing at it to boot. So that insidious little bit of messaging started up all the guilt in my head, about maybe if I just endured more pain and more fatigue and just pushed through more, I too could be working as as full time student and have a job to boot like most of them do.
It started that whispery little judgy colonized-mind voice saying that maybe I am just being lazy. Except I'm not. Except my Doctor has had to see me work myself into numerous flare-up incidents when I've tried to work at full time student hours. Each time she had to tell me that I needed six to eight week recovery at least, and would need to withdraw from enough classes to take me back down to part time load. I know I'm working at my limit and pushing it a little bit, carefully. I know that I'm doing everything in the world I can do. I know that I will harm myself if I try to do more.
But a colonized mind full of internalized ableism doesn't relinquish its grip easily, and it is the work of a lifetime to unlearn. Especially when the ableism messages are everywhere, externally and internally. See paper cuts example above.
But it is hard to shake off all of the guilt, shame, internalized ableism, and all of those paper-cuts being torn open again every time I receive this messaging, whether directly or implied. It is hard to shake off the feeling of inferiority and of weakness (because if you were strong, you could do it right? If you just had more willpower?)
You could just somehow make your body do what it can't with your condition...I mean, you don't know what their condition is and they're working through it, right? It is this very fact that you're not allowed to ask or know what the condition is that they mention or how seriously it affects them that makes it so hard to reason with the internalized guilt and ableism for not being able to participate fully in activities like work and school at the level most do.
But also review the power dynamics and assertion operating there. Who is allowed to talk and who is allowed to ask and who is not allowed to ask and who is punished for talking?
Paraphrase #4 "you didn't consider the whole of my person, being, and experiences before speaking"
In White Fragility, Robin DiAngelo cites many examples of the way white women and white people tend to hijack concern and resources back from Black People and People of Color who were speaking of the impact of racism and racist behavior on themselves. The resources and concern must always center back to the white women, the women in power. In these conversations, it centers back onto the hurt feelings of the relatively able-bodied person in question (or back to my original example with white fragility, the hurt feelings of the white women involved in racism).
Even though the person engaging in racist behavior obviously did not take the whole of the affected person in mind before engaging in it, somehow, before speaking of its effects on them, they are supposed to consider every aspect and bit of personhood of the person who harmed them before speaking. Do you see how this not only centers their own experiences and feelings over the person who was harmed, but also then serves to complete the process that I mentioned started above of restoring and reasserting their power over the person who was harmed?
I cannot find the article right now (if any of my two readers who I absolutely love! if you're still with me happens to know it offhand, please let me know), but recent studies highlighted the effects of having power on empathy. The upshot was that power reduces empathy, and that those in less power were always expected to empathize upwards. What expecting total empathy from someone you have harmed does, is assert your power over them. This is what they did to me in this conversation (and has been done to me in so many conversations like it I've had over the years, though to be fair, this is my first time trying having this kind of conversation outside of dire necessity related to academics or work).
Also, do you catch the insidious implication that if I had considered the entirety of their being, than I would have been able to know things that they had chosen not to share. This is, of course, impossible. Ergo, it is simply also a reiteration of the reminder that I should not have spoken about things that I don't know about. Even though what I am speaking of is not their being and person, but rather my own experiences surrounding disability.
Paraphrase #5) "Paternalistic statement of what I should do about some factor of my life relating to the request I made"
I don't remember Robin DiAngelo speaking of this one in particular, though I wouldn't be bowled over with a feather to discover that paternalism rears its ugly head in racism as well. However, it absolutely and definitely does rear its ugly head with disabled people.
Frankly it is none of their business what I do with whatever factor they have told me I should "deal with" in the way that they have told me I should "deal with it." If they were viewing me as a whole, complete, and equal being to themselves, they would trust that I am taking care of my life in the way that I need to.
The fact that not only do they think that I am not managing my life in the way I need to, and that they have a right to comment on that aspect, or that I wouldn't have thought of that aspect or already done everything I could have with that aspect, shows very clearly that they do not view me as a fully autonomous individual with as much independence and cognitive skill as they have.
Paraphrase #6) How dare you lay this on me!
Again this goes back to what Robin DiAngelo describes, that often white women will feel insulted and center their own emotional feelings and needs over the person they have harmed who is trying to address that harm with them. It is the same instinct to turn the responsibility around and remove themselves from the responsibility of harming and opening old wounds (above and beyond the condescending nature of their initial message related to the request).
And it is completed. Their centering of their own experience and righteous indignation. They have now completely eclipsed any knowledge or realization that they initially hurt you on axes of your own dsability (or in white fragility, racist trauma). It is now all about how you have harmed them and failed to center them.
Epilogue or Why does this matter, especially for three articles worth of words Sarah?
Why does this even matter though? Why can't you just be nice and polite and not talk about this stuff like a normal person?
The answer to that, of course, lies in choices. I could continue to quietly smolder when these experiences happen, and put on my polite submissive face. But these kinds of interactions preclude real conversations that could facilitate change from happening. These kinds of interactions, in their very stereotypically patterned responses, contribute to maintaining the status quo. Remember those statistics I mentioned about disabled people? The stereotypes surrounding our intelligence and agency? Remember that people are dying because of their disabilities when pharmaceutical companies price people out of life-saving medication?
All of these problems, to be adequately solved and addressed are going to absolutely demand and need people who can step out of these stereotypically patterned defenses of their own emotions and of systems such as capitalism. This is why this matters.
It is not just one conversation at one point in time. I've had conversations such as this more times than I can count or adquately remember. That is why this matters.
Because for People with Disabilities, survival, rich and full meaningful life with dignity, because being seen as equal and as full of agency for Disabled People absolutely demands real conversations.
Please, can we have those real conversations?
Because disability is only something that we are as a culture really beginning to engage with--and not very well at that--it might be easy to read what I have written, and feel like I'm describing something really trivial or not very hurtful. If it feels like I'm overreacting to things, I would ask you to sit with what I've written for awhile afterwards and ask yourself if it is possible that the reason it feels minimal, is simply that you haven't heard much about it. That simply, its not on an axis of your experiences and the things that seem important to you because our experiences have been minimized and often paternalized.
It is very important for me to say here that though this example could serve as a template for many conversations I've had over the years with people in academic, employment, or social power over me, in this instance (or more accurately iteration) of this type of conversation, the individual had none of these. The person involved also, I need to be clear, likely had the best of intentions and meant no harm. Also I should be clear that I am using paraphrases, since without direct permission to use their words, I don't feel like I should quote directly.
But the thing is, when people experience hearing the same things over and over regarding their very being and experience, it is like having to sit still while people continually reopen a wound. It never quite gets the opportunity to heal, or if it starts to, someone else comes along and rips it open again.
It starts with a small request on my part that others were also making. For particular reasons, the individual chose not to grant the request in my case, even though they had with others. The funny thing is, if the person had just said, "I'm not comfortable with that" even though all of the unexamined ableism contributing to that discomfort would still likely have been under the surface, I would not have paid it any attention.
Rather, though, the person sent a rather long and condescending-feeling message whose central point involved the invocation of that thing many disabled people are so sick of hearing, that we are asking for an "unfair advantage".
To be clear, though the words unfair advantage appear on a few lists of microaggressions used on disabled people (or PWD's), it doesn't appear on many. Someday, though, I hope that it will be commonly known and realized as a microaggression. Having your legitimate needs and/or asks, that you are already in this culture scared to ask to have met, continually dismissed and gaslighted in this way repeatedly is harmful.
When I first got the message, I started to feel really bad, and I couldn't articulate why until I realized. Every time this comes up, it is in the context of an unfair advantage over able-bodied people. It shames us for having needs that we have to ask to have met, or even sometimes for just having wants.
It also invokes another stereotypical thing that we are often told, that we are lazy and should just work harder (my own rendering of common arguments and underlying themes: like those able-bodied people over there, you don't see them needing or wanting all this extra stuff and complaining do you? Why can't you just be like them?).
So, I sent back a carefully worded message starting with compliments towards the person, and trying to move the conversation off of the personal (after a quick description of my past as someone who lives with a disability and my experiences) and onto the systemic issues at play.
And here is where the Able Fragility comes in. As I mentioned before, everything will be paraphrased and I will try to make clear what is my own interpretation and what stems from the prototypical conversation. In essence, each section of this person's prototypical response to my gentle request for a change in how they think about things and react to things, will be paraphrased into a topical heading and discussed.
Paraphrase #1) "No, its really not about disability"
In White Fragility, Robin DiAngelo speaks to the often used tactic of taking race off of the table, denying that anything racist could have happened. Denying the reality and lived experience of the person experiencing the racism at their hands. This also ties into what she speaks of, in the often used White Fragility tactic of placing the intent of the action and/or words as the sole measure of racism, rather than the outcome and the effect on the person.
Often used phrases she describes used by White people include "I didn't intend it" (therefore it can't be racist). It's not racist because I'm not racist. (I get to decide what's racist even though I don't live it and experience it in the same way you do).
In this case, they tried to establish their right to decide whether or not it was disability related or not. When you use a phrase towards me that is often used to silence and shame me for the legitimate needs that I have with the body I've been given, you don't get to decide that it is or isn't about disability. I live it every day.
Your intentions in this case have no bearing on the effect it has on me. Remember the endless stream of paper cuts analogy above. You opened up a disability related wound for me. It is about disability, and you don't get to pretend like it never happened, minimize, or pretend like I'm making too big of a deal about a small thing, or remove the focus from the subject at hand to the small nature of the request I was making.
Paraphrase #2) "You insulted me by bringing up your experiences and asking me to act differently in the future"
Again, Robin DiAngelo speaks in White Fragility of the fact that white people often feel insulted or attacked when they have their racism and racist acts brought to their attention. Notice that in this case, even though this person's words had a very real and harmful impact on me due to previous shaming that has been going on since childhood, my gently bringing this to their attention results in the statement that my attempts to address my hurt is insulting to them.
This begins the process of centering them and their feelings and personhood over and above my own. In asking this person to treat my own feelings and needs as important, I have asked this person to treat me as an equal. But that is somehow insulting and intolerable, and so the power needs to be shifted to them. I need to be reminded that my job is to make sure they are comfortable at all times and that they should not be reminded of their ableism or things they could do to address it.
Paraphrase #3 "I have a condition, too, but I don't talk about it."
Though the snarky side of me feels like wondering if they have a tendency to mention their Black friend when they are engaged in conversations relating to race (because of course having a Black friend means you could never be racist or engage in racism or racist systems), I will put aside the snark for now. Though the same implication comes loudly through. Your experience is invalid because I already have all the experience and knowledge needed on the subject. And I get to be the judge of yours. And I find yours wanting.
Robin DiAngelo does mention this seeming appeal to inside knowledge as a tactic white people use for deflecting real concerns regarding racism they have. Though here, this functions in a way particular, I feel like, to ableism. Though it shares the claim that they obviously need no more education on this topic, even though the fact that you're having this discussion with them clearly indicates that they haven't had the experiences you have had or to the level that you have had and that actually, there is some education on the subject that they still need.
But to get to the insidiously ableist part of this response, which is always accompanied by the "I don't talk about it", there isn't just the implication that I already know everything there is to know on this topic, there is a dual implication. The first implication being that you should and could be functioning as well as they are if you just shut up and tried as hard as they did.
The second implication is, whatever you go through with your disability, you should just shut up and go through it and any advocacy or speaking out about your experiences is just attention seeking and excuse-making (both of these especially when the person making the claim functions in an able-bodied manner and both know that the person trying to address the ableism does not; even moreso if the person with the disability has an invisible condition). It is in affect, an admonishment to silence.
But let's even delve a little deeper here, because the "I don't talk about it" serves another function too. t serves to make it clear that you are not allowed to ask what their condition is to see if there is any level of similarity in your experience in which to engage. Not only does it serve to try to silence you in the here and now, across the board, but it also silences you from being able to see from what perspective and with what experience they are claiming to speak from.
In terms of the harm done from this whole conversation, this one had to be the worst. I have a lifetime of shaming and denying the experience of my body when I tried to do as much as everyone else did and ended up needing so much recuperation time and failing at it to boot. So that insidious little bit of messaging started up all the guilt in my head, about maybe if I just endured more pain and more fatigue and just pushed through more, I too could be working as as full time student and have a job to boot like most of them do.
It started that whispery little judgy colonized-mind voice saying that maybe I am just being lazy. Except I'm not. Except my Doctor has had to see me work myself into numerous flare-up incidents when I've tried to work at full time student hours. Each time she had to tell me that I needed six to eight week recovery at least, and would need to withdraw from enough classes to take me back down to part time load. I know I'm working at my limit and pushing it a little bit, carefully. I know that I'm doing everything in the world I can do. I know that I will harm myself if I try to do more.
But a colonized mind full of internalized ableism doesn't relinquish its grip easily, and it is the work of a lifetime to unlearn. Especially when the ableism messages are everywhere, externally and internally. See paper cuts example above.
But it is hard to shake off all of the guilt, shame, internalized ableism, and all of those paper-cuts being torn open again every time I receive this messaging, whether directly or implied. It is hard to shake off the feeling of inferiority and of weakness (because if you were strong, you could do it right? If you just had more willpower?)
You could just somehow make your body do what it can't with your condition...I mean, you don't know what their condition is and they're working through it, right? It is this very fact that you're not allowed to ask or know what the condition is that they mention or how seriously it affects them that makes it so hard to reason with the internalized guilt and ableism for not being able to participate fully in activities like work and school at the level most do.
But also review the power dynamics and assertion operating there. Who is allowed to talk and who is allowed to ask and who is not allowed to ask and who is punished for talking?
Paraphrase #4 "you didn't consider the whole of my person, being, and experiences before speaking"
In White Fragility, Robin DiAngelo cites many examples of the way white women and white people tend to hijack concern and resources back from Black People and People of Color who were speaking of the impact of racism and racist behavior on themselves. The resources and concern must always center back to the white women, the women in power. In these conversations, it centers back onto the hurt feelings of the relatively able-bodied person in question (or back to my original example with white fragility, the hurt feelings of the white women involved in racism).
Even though the person engaging in racist behavior obviously did not take the whole of the affected person in mind before engaging in it, somehow, before speaking of its effects on them, they are supposed to consider every aspect and bit of personhood of the person who harmed them before speaking. Do you see how this not only centers their own experiences and feelings over the person who was harmed, but also then serves to complete the process that I mentioned started above of restoring and reasserting their power over the person who was harmed?
I cannot find the article right now (if any of my two readers who I absolutely love! if you're still with me happens to know it offhand, please let me know), but recent studies highlighted the effects of having power on empathy. The upshot was that power reduces empathy, and that those in less power were always expected to empathize upwards. What expecting total empathy from someone you have harmed does, is assert your power over them. This is what they did to me in this conversation (and has been done to me in so many conversations like it I've had over the years, though to be fair, this is my first time trying having this kind of conversation outside of dire necessity related to academics or work).
Also, do you catch the insidious implication that if I had considered the entirety of their being, than I would have been able to know things that they had chosen not to share. This is, of course, impossible. Ergo, it is simply also a reiteration of the reminder that I should not have spoken about things that I don't know about. Even though what I am speaking of is not their being and person, but rather my own experiences surrounding disability.
Paraphrase #5) "Paternalistic statement of what I should do about some factor of my life relating to the request I made"
I don't remember Robin DiAngelo speaking of this one in particular, though I wouldn't be bowled over with a feather to discover that paternalism rears its ugly head in racism as well. However, it absolutely and definitely does rear its ugly head with disabled people.
Frankly it is none of their business what I do with whatever factor they have told me I should "deal with" in the way that they have told me I should "deal with it." If they were viewing me as a whole, complete, and equal being to themselves, they would trust that I am taking care of my life in the way that I need to.
The fact that not only do they think that I am not managing my life in the way I need to, and that they have a right to comment on that aspect, or that I wouldn't have thought of that aspect or already done everything I could have with that aspect, shows very clearly that they do not view me as a fully autonomous individual with as much independence and cognitive skill as they have.
Paraphrase #6) How dare you lay this on me!
Again this goes back to what Robin DiAngelo describes, that often white women will feel insulted and center their own emotional feelings and needs over the person they have harmed who is trying to address that harm with them. It is the same instinct to turn the responsibility around and remove themselves from the responsibility of harming and opening old wounds (above and beyond the condescending nature of their initial message related to the request).
And it is completed. Their centering of their own experience and righteous indignation. They have now completely eclipsed any knowledge or realization that they initially hurt you on axes of your own dsability (or in white fragility, racist trauma). It is now all about how you have harmed them and failed to center them.
Epilogue or Why does this matter, especially for three articles worth of words Sarah?
Why does this even matter though? Why can't you just be nice and polite and not talk about this stuff like a normal person?
The answer to that, of course, lies in choices. I could continue to quietly smolder when these experiences happen, and put on my polite submissive face. But these kinds of interactions preclude real conversations that could facilitate change from happening. These kinds of interactions, in their very stereotypically patterned responses, contribute to maintaining the status quo. Remember those statistics I mentioned about disabled people? The stereotypes surrounding our intelligence and agency? Remember that people are dying because of their disabilities when pharmaceutical companies price people out of life-saving medication?
All of these problems, to be adequately solved and addressed are going to absolutely demand and need people who can step out of these stereotypically patterned defenses of their own emotions and of systems such as capitalism. This is why this matters.
It is not just one conversation at one point in time. I've had conversations such as this more times than I can count or adquately remember. That is why this matters.
Because for People with Disabilities, survival, rich and full meaningful life with dignity, because being seen as equal and as full of agency for Disabled People absolutely demands real conversations.
Please, can we have those real conversations?
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