So I Have This Thing
Disclosing your disability is a real pain in the ass. It’s complicated and emotional and can carry severe repercussions to your personal and/or professional life and there’s no right way to do it. There are a lot of wrong ways to do it, but there’s no one way which is indisputably right.
Up until about the second year of university, I generally just pretended I didn’t have a disability. I kept it secret and told almost no-one- including some of my friends. When I did decide to tell people, I kept the explanation brief and medical. “This is the name of the thing, this is what it does to my brain. Sometimes you might notice me doing some stuff, and that’s why.” Some of my friends didn’t believe me. The best reaction was probably my friend Neil’s in grade ten: “You can’t have a learning disability, you’re not stupid.”
Well, thanks for your vote of confidence, Neil, but I am in fact retarded.
In retrospect, I honestly don’t know whether hiding my disability was a good decision or not. Teenagers hang suspended in a state of existential psychosis, and their emotional lives consist solely of violent extremes. Not exactly the sort of people for whom you want to share your most tender vulnerabilities.
In my high school, people with disabilities were routinely mocked, ostracized, and verbally attacked for no reason at all. That provided a pretty strong incentive to pretend to be Regular David.
On the other hand, I recognize now that people were acting that way because they were all fucking crazy. Everyone had their problems. Everyone was in their own private war. I was too wrapped up in my own problems to realize this, but in hindsight I know that I could’ve trusted the girl whose brother had hydroencephalitis. I could’ve trusted the guy who had recently emigrated from Puerto Rico. I could’ve trusted the gentle matriarch of my grade’s stoner clan, who let me sit at their table for prom.
But I kept a close, tight circle, and jealously guarded my identity, because I was convinced that if people knew who I was- and knew what was in my head- they wouldn’t like me.
In university that strategy went pear-shaped. I got involved in disability studies, which explores disability from the perspective that it is society and not the disabled person which needs to change. Disability studies scholars are often prickly and combative, and in order to prove I wasn’t an interloper, I had to candidly discuss my lived experiences. Pretty soon I was meeting people who had already found out somehow that I had Asperger’s. It was fucking trippy.
But even though these people knew that I was disabled, and even though most of them knew something about Asperger’s, none of them knew how it impacted me and my life. They knew about autism, but they didn’t know about my autism.
So something kind of interesting happened. Whenever I met people and got to know them and felt it was time to tell them about the thing in my head, I told them everything. Absolutely everything.
I thought at the time that this was just me moving past my self-consciousness about my disability. I had immersed myself in disability culture and was hanging out with activists, and so now I was loud and proud.
My approach was now, “This is a list of all the things that are going on in my head. These are all the ways they impact me. This is all the stuff you might notice. In the event of this, this, or this, I would appreciate it if you did this. Oh, and I almost forgot about this.”
I was going to write a little about disclosure in that blog entry I wrote about the beginning of my relationship with Hannah. And I was going to advocate using the “maximum info dump” approach.
When I showed Hannah the blog entry, she said that maybe that was a bad idea.
“How so?” I asked.
“Well, when you did that to me, it felt like you were throwing all this shit at me while saying, ‘HOW DO YOU LIKE ME NOW?’”
“So it was a little intimidating?”
“Yeah, and you made yourself seem so much worse than you actually are.”
“Why didn’t you run off?”
“I like a challenge.”
I thought about this, and I realized that my approach wasn’t totally routed in disability pride. Part of me was still that paranoid tenth grader who was worried that if anyone got a chance to know me, they wouldn’t like me.
Without realizing it, in the earliest stages of our relationship, I had been daring Hannah to leave.
This led me to think about how Hannah had disclosed her disability to me. I knew she was in a wheelchair right away, obviously, but I didn’t know whether she could walk until our third date. I didn’t know she relied on attendant care until after we’d known each other for a few weeks. I didn’t know exactly what her attendants did for her until some time after that. Gradually, bit by bit, she eased me into crip culture. She gave me incremental pieces of information, and gradually I got the whole picture.
Hannah calls this strategy “chunking”.
I think it’s vastly superior to the strategy that I’ve used in the past. But it’s not the only strategy. The maximum info dump might actually work on certain types of people, specifically people who are straightforward, blunt, information-seeking, oh good God, it’s ideal for autistics.
My friend Amy, who’s in a wheelchair, uses yet another strategy- at least in her online dating life. I know this, because we met online.
Amy is capable of walking short distances if she absolutely has to, and in her dating profile she doesn’t mention she’s disabled at all. When we were making plans to meet, Amy mentioned that she occasionally used a wheelchair because she has a condition which makes her legs weak.
When we’d gotten to know each other really well, I asked her why she hadn’t told me before we met that she used a wheelchair all the time.
“Because guys freak out if they know you’re in a wheelchair. Seriously. They freak.”
Apparently she gets better results when she combines vague language with the concrete fact of herself and, hell, who can argue with results?
I don’t begrudge anyone the strategy they use to disclose- or the decision to not disclose. It’s such a personal, emotional topic, especially considering the wide diversity of experiences and attitudes, and the wide varieties of disability that are out there.
I guess the easiest strategy for disclosure isn’t a strategy for disabled people at all, but rather for the people to whom they disclose. I’ve come up with a simple, three-step process for people who get disclosed to. Here it is:
1. Be cool.
2. Don’t be an asshole.
3. Seriously, be cool.