My Journey with the Label “Disabled”

I have a disability. It's taken me a long time to come to this statement. I am able-bodied, white, privileged, a mother of two kids so why is it fair that I call myself disabled? This is a question I still grapple with. I am not ashamed of the label of disabled; rather I don't feel like I have earned it. Am I disabled enough? is a common question in the disability world, a world I'm not sure I belong to or would be welcome in. Everything in life is on a spectrum. No two people are alike; we know this. I am accepting the fact that not only do I fall on the disabled side of the spectrum, but my symptoms warrant the label. Maybe accepting that I am disabled, is the key to letting go of my shame of being unable.

Unable to write, unable to finish writing, unable to edit, seek out beta readers, take feedback, submit submit submit. I am unable. I have watched my peers, who "started" in places and times along with me, go on to win national awards. I have chosen the life of a writer at the same time as friends who now have several books out. I know, in my heart, that I have the talent, the skill, the drive, the passion -- the heart -- to have a published book out by now. I know that the only thing holding me back is my disability.

My privilege is largely what's prevented me from accepting my disability. I am white, cis-het, living a financially comfortable and stable life in a country with peace on our soil. I am very lucky and grateful. I don't need to work or apply for funding. I am more fortunate than most people with disability. But it's the more successful than me that you hear about in the disability community: those who achieved despite society’s ableism. You only hear about high-achieving disabled people. And when you do hear about us, low-achieving disabled people, we're blamed for our lack of accomplishment. Because disability is supposed to be something we overcome personally, not something our capitalist, productivity-equals-worth society must overcome on the community level. Even the disabled are blamed when we are unable.

I've examined the many potential reasons for why I have not achieved anything with my adult life. I've given up on most of my career dreams and ambitions. But the one I won't forgive myself for is not having a book out yet. Am I not talented enough? Not determined enough? Not educated enough about the industry? About craft? Could it be because I chose to have kids? Do I not know the right people? The answer of course is maybe to all of these. But I see people out there working hard, hustling, with kids, getting published.

Now you might be thinking, come now, Danica, you need to finish a book to publish a book. And by finish, we mean write not just one complete book length draft but several, then take it to beta readers, then sensitivity readers and implement their comments, pitch it to agents and sign with one, then maybe you get a publishing contract. And I can't even finish drafting a book (though I have literally hundreds of thousands of words written in the past ten years on abandoned book drafts and shorter works). My goal isn't to publish anymore, it's to have something ready to take to an agent.

So why can't I just do the damn work? What is this invisible disability I am finally accepting? My recent strides in understanding it are helping me accept it. I have been diagnosed with Persistent Depressive Disorder, ADHD, Generalized Anxiety, Obsessive-Compulsive Personality Disorder, an anxious attachment style (although I think it’s worse than that...), and struggle with chronic pain of various kinds, anemia, and otherwise unexplained constant fatigue. Recently, I have learned I may have Complex PTSD from an insecure and lonely childhood which was solidified by the one-two punch of a pair of what my therapist has called attachment traumas in my late teens. The idea of me having Complex PTSD fits so perfectly with my symptom profile that I wonder if I'm reading a horoscope. And with learning about C-PTSD comes learning about polyvagal theory (look it up) and the idea that childhood traumas have left me in a constant fluctuation between fight, flight, freeze, and fawning reactions to events in my life, with no real ability to stand down and relax. I don't know how to relax. I don't know how to experience joy. I have not learned, at the age of 42, how to regulate my highly dysregulated nervous system. (I am just starting to do the very intense work of learning how.)

Lots of people overcome trauma. There are lots of books out there written by disabled folx. My disability is not an excuse. It is an explanation. And it's a way of letting myself off the hook and not feeling so ashamed of being a failure. I'm not a failure. I'm disabled. My depression isn't just depression, it’s a freeze response from a childhood of trauma. My own ambition is at odds with this freeze response resulting in deep pain and frustration. I have never been able to really explain what it feels like, my disability. I just...can't. And no number of self-help books, craft books, no amount of coaching and techniques, no amount of time, will allow me to just do. Write. Be. Now, I'm finally at least beginning to understand why I am so paralyzed.

I've long believed in the lie that what doesn't kill you makes your stronger. Looking back, I was a strong little girl made weaker and weaker and weaker by adults as a child until I grew up to be unable. (Let’s hear it for the Weak People! Woot woot! To heck with the gross glorification of strength. But that's another post...)

Over two decades ago, when I first began questioning my place in an able and ableist society, I would think about how hard it was to get out of bed, how at the time I often didn't, even spending six straight months in bed in 2001. It's people without the right adaptive equipment and financial and social supports who are truly bedbound. But what about those of us who are in a mental cage?

Even though I've been on this journey for over twenty years, it's only been recently that I have been brave enough to speak the words "Do I have a disability?" to my psychologist of nearly a decade and psychiatrist of nearly two decades. Now, this is, of course, mostly because of privilege: had I not also married a man who can support me and our kids, I would have been forced to confront this question much earlier. When I talked about it recently with my psychologist, she agreed that absolutely, I am disabled. When I asked my psychiatrist, he gave an answer that went something like this:

“Yes, you are absolutely disabled, but you are only disabled because of the society we live in.”

So here is my plea: to be seen. Not as a failure, not as someone who should be ashamed of myself, not as lesser than. I could be out there with a published book under my belt, not left behind by my peers, out there as a peer with other published authors, living the full author life, respected by my own friends who have books out. Except, I can't. I am unable. I am disabled. Please stop leaving me behind. Stop leaving all of us behind.