On Independence
As a disabled person, I often think about the concept of independence. When I moved back in with my parents a few years ago, it felt like I was handing over my independence and the life I’d known and lived so long on my own. But I realized recently that that’s not only ableist, it’s ethnocentric because there are many other cultures in the world where that’s what you do, you stay living together as a family. I also live in a place with an absolutely untenable cost of living and with my osteoporosis diagnosis, I had to accept the fact that I need more help now than I did in my 20s and 30s.
The more I thought about the subject, the more I wanted to see what other people’s takes were on the idea of independence—both disabled and non-disabled people. I polled a few of my fellow Substackers and here’s what they had to say:
For me, independence is not about doing everything for or by myself. With my disability, I need significant assistance with many tasks, including care and transfers (in and out of my wheelchair). Independence means the ability to make choices that shape my life -- to create the life I want and enjoy it. With this understanding, it means choosing how I spend my time and with whom. It means the free pursuit of happiness in the form that brings significance to my life. I will also note that humans best thrive as interdependent by helping each other thrive. No person is or should be an isolated island.
Independence is something so important to me, and it has been from a young age. I still don’t like to be told what to do, for someone to assume what I think or believe, and gawd help the bold [redacted] who wants to mansplain something to me.
I live alone; I am currently unentangled. And I love it. In the beginning of my last relationship, as we were falling in love and getting serious, I was driving home from work, swooning over this great new thing and then I had this moment of utter F***********ck! I couldn’t just do what I wanted without coming off like some sort of selfish jerk. (And, by the way, those things are just normal aspects of being a good partner. Still…) I began to mourn the ease of my single life; how simple and smooth it was. We were together for 2 years. And, now, in the words of Warsan Shire: I will only have you if you’re sweeter than my solitude.
Yet, as one does laps around the sun on this spinning rock of ours, I’m beginning to appreciate interdependence. But, rather than being “dependent” on others, as the dictionary states, it’s being able to rely on others. Having that alliance of reliance is something worth cultivating. And I mean that much more toward platonic relationships and creating that protective circle you can depend on, and give to.
—Sandra at A Sassy Little Substack & The Happyist
I had to think on this one a bit; I admit I’ve never really thought much about what it means (which feels like a privilege). I think disabled- and chronically ill-me would say that independence means the ability to choose when and how to ask for help. Deciding I don’t need help with a particular thing allows me to do it independently, but of course it’s also a privilege to be able to make that choice. I know many have to rely on others to get their basic life needs met, and independence may look different for them (though I still think in that case, micro-decisions of autonomy that are respected by the caregiver are vitally important - for example, someone may need help bathing, but gets to decide what kind of soap they want).
—Amy at The Tonic
Independence is the freedom to do what I want, when I want. Or to at least know I COULD do something if I choose to. I’ve never been someone who’s done well when people tell me what to do or what to think. I’ve always preferred coming to my own conclusions, making my own decisions, and zigging when others zag. In the context of disability, it’s been frustrating to lose a lot of my independence mobility-wise. I have to face certain realities now that I didn’t have to before I got weaker. But I still maintain an independent streak, which I value. No matter how weak I get, that will never go away.
—Chris at Hello, Adversity
So many parts of each of these reflections resonated with me. I’ve realized that I need to reframe my definition of independence. It doesn’t have to mean living on my own. Plenty of people don’t live on their own and that doesn’t make them any less independent. My life may look a lot different than it used to but I still have many aspects of independence in my life that bring me joy: my job, my weekly Trader Joe’s runs, seeing my friends when I can, going into the office when I can, choosing how I spend my day, going to physical therapy, having my “me time” in my TV room, driving and taking care of my car…
Independence doesn’t have to look just one way, as evidenced by the varying perspectives above. We can all find some form of independence in our day-to-day no matter what changes come our way, what physical challenges we might be dealing with, or who we’re living (or not living) with. We live in a culture that emphasizes the idea of “rugged individualism” which is harmful, but also inaccurate. We’ve all needed or will need help from someone else in our lives. Like Sandra and Kelly said, that’s not being dependent or taking away from our independence, it’s just allowing ourselves to rely on other people sometimes, and that’s totally ok. None of us can get through this life alone. Sharing one of my favorite songs to that tune (pun intended) below.
If you have anything to add, feel free to drop it in the comments! ⬇️
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So insightful and well-observed Jackie! Thanks for the nourishing food for thought!
I liked these different responses, Jackie!