Hi. I’m Samantha Bassler. I haven’t done anything like blogging for a long time. I’m a big fan of profanity, so I’m just gonna say it, it’s been a fucking long time. :)
I guess this is between a blog and a newsletter or something. It’s the new way that everyone writes. I thought about talking to other people or trying to write an article or a book or something, but who has the time? I’m just going to write my ideas down when they are fresh. If other people can do it, so can I (apparently, that’s what the creators of ABBA thought before they started their band, and they were WILDLY successful, so it’s good enough for me).
ANYWAY. I need a place to write about disability activism and ableism, especially since the pandemic has waxed and waned for most able-bodied folks. As a student of disability and ableism since forever (having lived in a disabled body since birth), but also having really properly thought about disability rights and ableism since 2006, I was really bracing myself for the onslaught of public opinion on illness and disability after the first major worldwide pandemic in one hundred years. I mean, it was bound to happen. All of these able-bodied people, suddenly having their privilege shaken, grappling with their fragility and their humanity. It’s scary and deeply traumatizing. I’m not trying to come across glib here. It is traumatising. As someone who has always had a body who failed her, a body who was constantly a ticking time bomb of autoimmune disease, chronic pain, and mental illness, even I have been prone to moments of ableism, feeling superhuman in those months when I am in remission, when the latest medicine is working and my pain is kept at bay. It’s natural and human to feel like this. We live under systemic ableism and racism. We all want to have perfect, functioning, beautiful bodies that align with white supremacist ideals. That’s our culture. We have to RESIST it to live otherwise.
Now that the vaccines have been effective, and our time of hibernation and avoiding one another in fear and trembling has been successful, we are gradually reappearing from our great slumber. Opening our eyes, welcoming ourselves and reintroducing ourselves to the world again. We are taking those cautious steps of trust. We want to trust each other again. The problem is that some of us don’t have that luxury or that privilege, and that makes the privileged able-bodied people feel bad for us. So they want to figure out a way to fix it. One of the ways they do that is to attack our identity as people with disabilities.
A common cultural trope in ableist society is to view the non-normative body and non-normative mind (so I am talking about both invisible and visible disabilities and illnessess here, those that afflict the corporeal body and also those that affect the mind, e.g. mental illness) as itself a negative source, something to be cured and something to resist. Anyone who has taken even a cursory look at the history of disability can read this for themselves, and I have written about it behind paywalls, as have many others. Gratefully, the Society for Disability Studies has a brilliant journal called the Disability Studies Quarterly, which is open access. You can do searches there for a more detailed look at this trope. A metaphor is to talk about disability or illness as infectious (like a virus), which causes the person to become something other than themselves, to lose their original identity as a person. They become overwhelmed with their pain, their cancer, their virus, their depression, their anxiety, and they no longer know who they are. They forget their original identity.
The cure for this problem, from the religious perspective, is redemption and forgiveness of a deity or higher power: specifically, for Christians, of Christ’s redemption and salvation from sin. In fact, disability and illness have a long history in literature as being analogous to sin. The cure for this problem from the perspective of science is to find a cure. However, as we have just lived through in the COVID-19 pandemic, a cure might not be possible. In fact, in a lot of cases, for most disabilities, a cure is not possible. Cancer is an exception: for many cases, especially nowadays, depending on when it is caught, cures are possible. Viruses can be resolved if the body is ‘strong enough’ (an ableist trope, of course), but that is a game of chance. The first port of call is to avoid catching the virus altogether through vaccines or seclusion. For people who live with chronic pain and illness, a cure is usually not possible.
This is why disability identity and activism becomes not a tool of poisoning oneself, but a tool of ‘redemption’ (if you want to put it that way). You do not erase your identity by embracing your lifelong status as a disabled person (most of us prefer identity-first usage, not ‘person with disability’ but ‘disabled person’). You empower yourself. You do not erase your former identity—for many, and for myself, as a lifelong disabled person, you cannot erase a former self. I haven’t had a disability for a prescribed amount of time, say twelve years, like the woman with the hemorrhage in Mark’s Gospel, chapter 5. I have never lived without a disability. I was born into this world with juvenile rheumatoid arthritis, I developed fibromyalgia in my early adolescence, I developed systemic lupus erythematosus in my twenties, I am a lifelong survivor of C-PTSD, and I am a survivor of bulimia nervosa. I have mild obsessive compulsive disorder and generalized anxiety disorder. I take an antidepressant and a mood stabilizer, as well as immunosuppressant medicine.
For me, EMBRACING the identity of a disabled person was the first key to my empowerment, to knowing who I am, and to unleashing my potential and my benefits to society. It is the key to how I live my truth and make a difference. It is not something that should be cured. I am, in my own imperfect way, part of what makes life beautiful. All of us, wherever we are, we all have a story to tell. This is my story.