I began writing this post about a month into the healing process from a fractured femur; now my leg is nearly healed. This healing process has been a really interesting journey, largely because it is the first time I have done so while in a relationship. Being with my love during this injury has provoked a flood of intense emotions and thoughts about the meaning and value of my body. Many of these have thus far been unexplored, or at least not owned up to, despite this being a relatively decent fracture out of the 60 or so I have had thus far (stemming from my disability, osteogenesis imperfecta, otherwise known as brittle bones).
Though I have worked for nearly a decade on forging a radical disability identity through engaging with disability activism, culture and studies, I continue to grapple emotionally and psychologically with the disconnect between disability positive tenets and my view of my body. This disconnect has become all the more apparent during this injury.
Injuries take away much of my independence and render many tasks the responsibility of those around me. During this injury, my love has taken on nearly all of the cleaning, cooking, laundry, etc. This should be a welcomed break from the drudgery of domestic life but it is not. I hate it. It makes me question how valuable I am as a person because I cannot give to her the way I feel I should. I know to critique this idea of “should” – but even with the social criticism of the implicit value of this statement, I still feel frustrated and saddened by my inability to perform even the most menial tasks.
Even though it goes against crip political values to admit this, I sometimes struggle to maintain a disability positive attitude. In an injured state I feel I appear vulnerable or unable and I hate this. I hate showing this side of me, even to the one who I want to share all of myself with, regardless of how real it is or how much disability is a part of me. It is at these moments that I internalize a lot of disdain and sadness; reminiscent of my adolescence.
I find myself frustrated when it takes me longer to put my pants on. I burst into tears when I spill things and cannot pick them up. I hate not being able to clean the house the way I want to be done. I hate not feeling sexual and sexy. I hate struggling to get undressed and by the time I do, I feel so unattractive and unworthy that I cry instead of feel hungry for sex – something, of course I pride myself on. I hate it all. It makes me think I hate my body. It makes me wonder how the hell she continues to love me through all of this. My love told me during the harder part of this injury process that I rolled my eyes at her more than I usually do when she tells me that I’m beautiful and that she loves me. It is awful but at those moments I just do not believe her. How can she possibly think I am beautiful when I feel so pathetic?
All of these negative thoughts create significant cognitive dissonance in me, as I fancy myself to be an uppity crip. I believe I am beyond the negative understandings of disability and I thought I believed what I espouse, particularly in viewing disability as a beautiful and natural. Yet when it comes down to me dealing with a more disabled body than I am used to, all of my crip body politics fly out of the window. This realization exacerbates the negative feelings I experience concerning my body, as I feel guilty that I am not a good disability scholar-activist because I am allowing myself to concede to dominant narratives of disability.
A sage in my life reminded me that everything happens for a reason and that this may be a healthy catalyst for me to deal with the demons in my disabled closet. She told me love forces us all to open up the internal closet where we hide away things we do not want to deal with. The sage believes that in this way love is transformative because if we open ourselves up enough to allow our partner to see the good along with the bad, that some of these issues can be absolved through the healing properties of love. During this process, I finally articulated my struggle with feeling good enough for love as my leg heals and my partner held me and repeated to me how much she loved and how worthy I am of her love. As tears rolled down my cheeks, I took deep breaths trying to breathe her words into me. I tried to engage in that hug as though it were a meditation and allow myself to take the words and run them through my body.
I want to release myself of the social baggage of disability. I want to look at the mirror and always see the beauty that is me. I want to do this all with her by my side. For now, I am just trying to be more patient with myself and to take her words as her truth.
Thinking about this experience has made me really conscious of dynamics of interable love – love between a crip and a nondisabled person. It has made me realize I want to research this topic because it is ripe for scholastic masturbation. I have started to analyze and reconceptualize my understanding of care and explore ways that even during periods of physical incapacitation I can and do give. I want to explore why it has taken experiencing an injury with a partner to make myself own up to these internal truths and why somehow listening to her say I am worthy of love makes me think I should believe her. I want to hear the thoughts of people who have experienced interable love – and how this has impacted their self-concepts.
Please share your thoughts on this.
Wow, Bethany, I knew we had a lot in common! 🙂 I am doing some writing on similar topics myself right now. My hellacious three years happened after I ended a relationship, so I do not have the same experience, but I remember the fears (and still have them when thinking of potential new partners) of how someone could love me when I am not my usual crip self, when there is an exacerbating issue that makes me need more assistance. It is scary, and I think it is normal because of what society’s overarching messages teach us about who is worthy to be loved. Rock on to you for confronting your feelings! That is the first step (no pun intended)!
Bethany,
Because you were born with OI, you have always known yourself as you are. With this “break” you have described having to deal with an increased level of disability and a decreased level of function.
Could it be that you are simply experiencing what many people experience when they go from not being blessed with disability to suddenly acquiring one?
Isn’t it perfectly typical, and certainly “normal” to grieve a loss? Losing function, losing a pet, losing a loved one….all are loss, and when we lose what we value, don’t we grieve?
Some of the proudest, most righteous crips we both know once grieved the loss of the person they were before accident/injury/health emergency. And after grieving for as long as the grieving process takes, they re-invented themselves, came to acceptance, came to even embrace the new them, and then moved on, strongly and proudly.
Maybe the difference here is only that because this is temporary the healing will happen so quickly that you won’t have enough time to go through the whole process and come out the other end knowing in your bones that you are the same sparkly, strong, sexy, capable woman you have always been.
That’s not to say that each day might not feel interminable right now as you will yourself to heal quickly so you can return to the you that you are used to. I just believe that if the situation were permanent, you would grieve, you would come to accept needing more assistance with some tasks, and you would get on with it, proudly and strongly.
And maybe some of what’s happening is because maybe, just maybe, you are looking at you, and your current situation through the lens that you THINK your beloved must be looking through and judging you. The good news is that she has told you that your worry is most certainly NOT her reality. And if you love her, you will graciously accept her word, and let it be salve for your doubts.
And then there’s the matter of relativity…for many of us who appear to not have any disability….we still go through times where we feel like we aren’t “good enough” or don’t “do enough.” And as we age, or put on weight, or start to lose our vision and our hearing and our flexibility, those feelings are prone to intensifying. Grieving the losses is part of life, and it’s universal…in fact, it’s hugely positive because it’s sort of a catalyst for growth and transformation. At nearly 64, I still look in the mirror sometimes and wonder what happened to the spunky, agile twenty-something me that still lives inside these bones. lol…
What a gift you have given the rest of us by sharing these thoughts and doubts. Along with Rahnee’s note on Facebook earlier this week, your words are a hand reaching out to your sisters (and maybe some brothers, too) to let them know they aren’t alone. And with these words, you are already communicating that you are moving through the grief to acceptance and enlightenment, and reassuring others they can do that, too.
Thank you for your strength!
First, let me say: Welcome to the blogosphere! It’s exciting to see someone with your insight and authenticity putting their writing out their for the community. Above, you say “I want to research this topic because it is ripe for scholastic masturbation,” but I think both good scholarship and good blogs are strictly opposed to such practices as “masterbation.” That is, by putting these ideas and experiences out into the world in various ways, you are not having all the fun yourself but turning it into a group activity. So, the more accurate framing would be that of an intellectual orgy. So, I edit the above statement and say: Welcome to the orgy!
Next, the topic you are hitting upon here are really rich and reeeeally important. To me, this reads like a “confession” of internalized ableism. I say confession not only as an allusion to the title of your blog, but also because there is this ethos that the “real” crips (as a radical identity) have gone through the grieving process mentioned by Marsha above and have come out the other side with pride. Now, while I believe in radical pride and think it is good that such ideals are the core of what we strive for, I do think it is just that: an ideal. Like any virtue, I think there are times when we are closer to this ideal and times when we are farther away, but no one could possibly live up to the expectation that we are always “uppity” (a great term). I don’t talk about it much at all, but I know that those closest to me know that there are times that i do NOT have crip pride and experience that dissonance between my ideal and my reality. Just as I sometimes fail to live up to my ideal in how I respond to other oppressions that I don’t experience like race, class, or gender, even though I strive, I sometimes fall short in how I grapple with my own disability oppression. What I’m trying to say is that I think it is a flat out MYTH that we can ever really get past our internalized ableism.
I think their is much to be learned from the “confession” approach you take here.
First, there is something really satisfying about speaking to your experience “outloud.” This is ESPECIALLY true when your experience runs contrary to a dogmatic myth of any sort. So, it can help us to feel more liberated to say that our lives are not just matters of constant suffering as mainstream culture would believe nor a constant state of radical pride as crip culture seems to demand. We are all much more complex than that and there is nothing wrong with SAYING that.
Second, I have a friend who has recently pointed out to me that this ethos of constant, unrelenting radical pride might actually HURT the movement. If the expectation is that we all “get over” our internalized ableism and get to a state of constant radical pride, it alienates a lot of folks who may not feel like they are up for that task. It may actually help radical crips to appeal to that wide swath of people with disabilities who haven’t gotten involved with the movement if we talk about the times when they fall short of our ideal. That is, by admitting we still have internalized ableism, we create space for others to grapple with their own. Perhaps the mode we have to take on to create a true, far reaching revolution is to challenge both oversimplified pictures of our lives and deal with the messy reality. It is this reality that will be our common thread and bring us together.
So, confess away sister. Don’t do it in soft whispers of shame to close friends and lovers, but shout it in the face of power.
This is the best thing ever written about a broken leg, displacing “The Cast” and “The Cast Off” — by Marge Piercy.
I am in so much agreement with philosophercrip!!
me too! he says:
“this ethos of constant, unrelenting radical pride might actually HURT the movement. If the expectation is that we all “get over” our internalized ableism and get to a state of constant radical pride, it alienates a lot of folks who may not feel like they are up for that task.”
i totally agree, especially applying this to transness and my/our internalized transphobia. writing the paper with you, bethany, i came to this realization that my shame about my emotional experiences of gender dysphoria is a form of transphobia. or, i am ashamed that i am ashamed of my body – and this is a social injustice. because the rhetoric goes: to liberate ourselves, we need to love our bodies. locating the problem in our emotional experiences i think is just as painful/harmful as locating it in our bodies (the logic of radical body-love as form of resistance). i think conceptually parsing out the injustice in the fact that our society causes us to feel these feelings (just as society dehumanizes our bodies), and we are entitled to all of our feelings, helps to locate the origin and responsibility for our pain outside ourselves, even when we are emotionally struggling. we haven’t done anything in order to make ourselves sad. its their fault!
what is really difficult for me is when i judge my feelings (about my body or anything else), and then i judge my judgment of my feelings. when i have liberatory moments in emotional struggle are when i can just experience the feeling without judging it. but that is very difficult to do, and it still hurts. especially the shame about my shame, or when i feel depressed about being depressed. then i get into a downward spiral. shame is really hard to get out of. if i think: shame=oppression and shame=injustice, then it helps me to feel validated in my shame. because it comes from outside, even though it is a very internal emotion.
i feel similarly about my embodied/emotional relationship with activism. as a radical gender freak, i have aimed for a while to smash the binary gender system. because it hurts me, but also because it maintains sexist oppression and male domination. but smashing the binary hurts. because i get punished for it every day through people staring at me. now i’m at a point in my identity where i’m finding myself more unhappy about people not seeing my gender (as male-spectrum) than i am about assumptions of gender binarism. though it is still hard for me to feel comfortable in any gendered restroom. my activism used to be a huge part of my gender identity. now i feel that i do activism because i hurt. and telling people i hurt is activism, because they don’t know anything about trans issues or trans people, and telling them i hurt renders me human.
Bethany I’m so excited to hear where questions of interable love take you!! sounds hot. xo
Also, telling your painful stories prioritizes your embodied, emoting, living self over any rhetoric (no matter how well-meaning the rhetoric may be) – and that is radical. and a form of self-care, which is a form of activism. when discourse has power over our feelings about ourselves, it is oppressive, even when the discourse is liberatory or has liberatory intentions.
maybe i should’ve saved that tidbit for our next paper. 🙂
I feel just this way, too, right down to the cognitive dissonance because I’m mostly full of fiery activist fervor. Injury.. or sudden fluctuations… are hard to adapt to. I hook my sense of self or pride onto some little thing like putting on my socks (or, how much I write in a day) and then wham. Readjustment and letting go and having to believe that worth lies somewhere else. But the strongest people I know cry in doubt plenty of the time.
I already commented on another of your blog entries but as you requested to hear thoughts from other people on the matter I comment again :). As I already said my boyfriend was born with no arms from the shoulder. And this relationship is really a wonderful experience. He has so much love to give, it astonishes me everyday.
Telling the whole story would be too long to write here but if you are interested: I am actually writing a blog about it. Because he wants to change how the world sees people like him and the blog is my small contribution to that.