FAQ: Personal

Why do you always talk so much about your disability?

Even communities focused around particular disabilities can be ableist as regards disabilities not under that umbrella. In ND spaces, I can talk about sensory processing challenges or anxiety or the many difficulties that come with the Autism Package Deal. I know you all understand and accept, because many of these things we have in common, or are discussed so frequently in our communities that some understanding is gleaned. It’s our normal, and that’s a fabulous, special thing.

I also know that people who don’t have chronic pain don’t understand it. It’s a very different kind of spoon shortage to that provided by autism or anxiety or insomnia, and I have spoon shortages provided by all four of those things! It means that some days I am mentally raring to go but I cannot type. It means some days I’m resting for five or six hours between typing spells. It means I’m dealing with the distress of never being able to do, reliably and confidently, the work I wish to do.

I talk because I get a lot of asks demonstrating to me that the community doesn’t understand what it means to be disabled in this way in the same way it does anxiety or executive dysfunction – for example, how much answering asks costs me in spoons. I get a few asks that can be answered by the asker just scrolling down the first page of this blog with no comprehension that the expectation that I can type an answer is causing me difficulties. Autism makes it hard to communicate with people face to face; chronic hand pain, for me, is as much a communication disability, one that makes working online difficult. Unlike other autistics, the fact that I am more expressive and confident in written communication is counterbalanced, hard, by the fact that typing hurts me.

You know how you talk about autism or mental illness to neurotypicals and they don’t understand? This isn’t much different. I’m talking all the time to folks without chronic pain, but since my pain is a major factor in how I can run this blog and interact with you, I need that same understanding you’re trying to seek from the neurotypical people in your lives. I need your patience and acceptance that chronic hand pain is incredibly disabling for a blogger and writer, and it always dictates what I can do on this blog and how I can do it.

In fact, this sort of question rather demonstrates why I need to keep on talking.

Why don’t you use speech to text?

I’m sure you mean well, but this is the “Have you tried yoga?” question of chronic hand pain. (Although we get the yoga questions, too.) Everyone asks this. Friends, family, physiotherapists, doctors, psychologists, psychiatrists, coworkers, anons online… It doesn’t seem to occur to anyone that I might have been asked this before, that I might have thought about it myself during the last seven years, that I might have wasted hundreds of dollars on programs that don’t work for me, or that taking the time to type this out or link you to a previous answer is a use of spoons I’d rather be using on something else…

I can’t get speech to text to work because I am autistic. I have minor speech impediments that don’t impact my communicating with people, in the main, but don’t work with computer programs. I’m a fast typist, despite my pain, and the frustration I feel at trying to correct the horrifically-wrong punctuation and wordage via diction to be meltdown-triggering. When it takes me ten or fifteen minutes to correct a sentence I could type in one? When the fluency I have in text, something I have in no other form of communication, is stripped from me? I’m slamming my fists against the desk. I’m throwing things at the walls. I’m yelling and screaming. I’m in full, violent, aggressive, shrieking meltdown, and you’d better believe that I get more done by resting for hours between the keyboard than I am by attempting, again, the nightmare of speech to text and having to deal with the meltdown that follows.

Please don’t ask me this question. Please don’t waste your spoons on something I’ll delete. If you know not to ask people if they’ve tried yoga or meditation or mindfulness or gaining/losing weight, add “speech to text” to this list. The chronic hand pain sufferers in your life will be grateful to not hear this question from your lips, because I assure you that if we have access to a working version, we’ll already be using it, and we’re very tired of explaining this for the thousandth time. I don’t cause daily pain flares via using the keyboard by choice. It’s just the only way I can have any kind of meaningful communication with other people, especially other ND people.