Jason: “I just realized it’s completely normal to wipe your butt.”
Me: “It’s a privilege, don’t forget it.”
A window into our conversation while sitting and working at our desks the other day.
(When you’re disabled you have to lose all modesty as these things are a matter of fact. Don’t be embarrassed if you need this kind of help. Friends have even helped me go to the bathroom when Jason isn’t around. It is what it is)
Every couple has to work together to find their rhythm and rhyme and we’re no different. But as someone who once wasn’t disabled and in typical able-bodied relationships, it’s no doubt that an interabled relationship has its differences including unique challenges and communication (necessary for any relationship but even more so for interabled).
An interabled relationship is not better or worse, just different.
One of the major differences of an interabled relationship is learning to be dependent (depending on your disability level). There’s not only the phase of difficulty in accepting being or becoming disabled, but I’ve also been a fiercely independent person my entire life — never needing anyone to make my own way. This adds to the difficulty of this dependence vs independence dichotomic journey.
But this experience has also made me learn how to accept help, which I haven’t always been good at. Don’t get me wrong, I still hate it and I’m not exactly good at it. There can be another side to “learning, growing and philosophy of life, blah blah” and that is: it still absolutely sucks to be dependent for every single little thing. Sometimes I want to crawl out of my own skin due to the lack of mobile independence. But I also challenge us to ask, What is wrong with relying on each other for support and why do we see needing help or care as a weakness? Humans are interconnected so why pretend we aren’t?
“Nothing can exist by itself alone. It has to depend on every other thing. That is called inter-being. [...] There is no being; there is only inter-being.” -Thich Nhat Hanh
There’s this illusion that dependency in interabled is one-sided which contributes to the “hero vs burden” narrative. This is where people get it wrong: the assumption that humans have nothing to offer besides walking or looking a certain way aligned with the sliver thin representation spectrum of what humans or couples should look like. It’s not one-sided, though. Like every relationship, each side has its strengths and weaknesses and we figure out how to meld them together in a way that allows us to work in a healthy and constructive way. And even after 12 years of marriage, we’re still figuring it out. This is true for any relationship, it’s a lifetime of learning. And in any relationship, disabled or not, partners depend on each other and fill each other’s voids. Jason depends on me for many many things, too.
Having to accept help also develops a form of intimacy that doesn’t exist in the same way as non interabled relationships because in interabled you’re constantly interacting, which of course invites the potential for more arguments but it also creates potential for the casual candid interactions; the constant jokes I tell while we’re transferring to go to the bathroom or the in-depth conversations on all subjects (sociopolitical, art, design, human nature, advocacy, our projects we’re working on…) we get to have because, well, we have the time. When everything takes extra time to do the minutia, everything is forcibly in slow motion, whether going to the bathroom or getting ready to go out. And this extra time is filled with less busyness and you're forced to live in the moment and talk.
We’re not perfect. Jason and I have problems and highs and lows like everyone else. And, yes, there are unique challenges from having a disability. I’m not going to lie like others who pretend there aren’t. But every relationship has challenges, and much of the problems we may have are related to us as people and not necessarily the disability itself.
One of the great things about Jason is his support of me as an individual and endless support of my advocacy of 15 years — even if it meant way less time for him or the chaos of a Kam storm; an idea or project I’ll have and how intensely focused I can be on it. He’s never complained that advocacy takes all my time, and instead constantly reassures me how important the work is and not to get down on myself. He allows me to be fully who I am as an individual, and I support his endeavors, just the same.
While Jason doesn’t appear on my social media much (because he genuinely hates attention and photos. He’s more of an observer than a spotlight type) it’s because he never wants to overshadow the advocacy being delivered from a disabled perspective. He supports and likes me advocating as an individual, because while we think interabled advocacy is important, it often becomes a romanticized story with the focus inherently on the disabled person who was able to find an able-bodied person to love them, and how amazing or (surprisingly) good looking the able bodied side is (because apparently disabled can only attract trolls). And no matter how much disabled advocate against this, it’s inherently how people will see us. So it’s important for people to see ME first and know me as me, outside my relationship, and not just the fact that I found an able bodied person to care for me, so all my fairytale dreams must’ve come true, and how lucky I should feel (because I’m disabled). But my dreams extend far beyond a relationship, and my dreams coming true are just beginning.
Due to the constant and growing physical dependence, it’s even more important for me to express my independence and autonomy as an individual so people see me and not just the disability or an object to be cared for. Independence isn’t just physical, it’s also of the mind and your spirit. So see me as just another dot on the spectrum of humanity, rather than someone too different to understand. #kamswheelstravel
Follow more of my writing, travels and art @ Instagram.com/kamredlawsk