Like I said a few times, I planned this as a ministry blog. One where I use my own name (a first for me!) and that I link from my social network pages. And we live in a time when it’s known that employers check Facebook and your professional appearance therefore has to carry over wherever someone might have a camera (that is, literally everywhere). That means this blog can’t help but be a professional blog at least in the sense that it represents me and may be read by a potential employer. If they read it before an interview, will that change the way they see me? Will things that would otherwise be seen as ordinary quirks be seen as limitations that will prevent me from doing good work?
Because of that, I worry a lot when I talk about my disability and specific difficulties I have. It’s hard to provide context, I have to realize that not everyone who reads this knows me. When I talk about a room (or bus) spinning because there’s just too much to process, will an employer think I can’t handle any job where there are likely to be a lot of people in a room at any point? Does it sound like I’m just going to shut down? If I talk about missing my mouth when I eat (used to take intense focus to eat normally, now it’s only occasionally a problem if I’m trying to do other things at the same time), is a reader going to imagine that I have no motor control and I will need everything done for me?
I could stop every time I write about these things and make a point of listing my strengths. I could mention that I made it through grad school with almost no understanding of what autism was, because apparently people thought telling me would give me an “excuse.” So I never told my teachers in college or grad school, never had any supports, and never had anyone mention that I might have a disability. The couple of times it came up casually, I had professors with psychology backgrounds react with some variant of “Ohhh, of course. Why didn’t you let us know so we could help?”
Because I didn’t know I needed help. As far as I knew, autism was about being disconnected from physical space and not dealing with sound well. I didn’t understand how it affected my work and just assumed everyone dealt with the same difficulties I did. Many things I’ve since learned are common autistic traits back then just seemed like areas where I failed to be normal. Everyone else did this easily, what was wrong with me? I figured I just wasn’t good enough. Other people read me as weird, disorganized, quiet – not disabled. That’s the curse of being “high functioning” – those little oddities are still very visible, but without a reason for them people seem to find them kind of unsettling.
Still, I think I’ve done well. I make friends (well, positive acquaintances) fairly easily and through a lot of effort can communicate in a way that seems normal, just shy. I’ve done preaching and other public speaking, so obviously I can conquer that “too much going on” dizziness. It’s just very draining and I need to spend a lot of time afterward being alone somewhere quiet. As discussed in an earlier post, I’ve done a lot of work on my coordination and I haven’t been described as clumsy in years. (It was one of the first things anyone would say about me as a child.)
Getting around my disability sometimes takes a lot of energy and effort and sometimes might even require some small accommodation, but it’s something I do every day and have done all my life. I’m pretty well practiced at it and definitely capable of doing it for the right job. (Heck, even the wrong job. I spent almost a year as a daytime cashier in a very busy store and did well at it. It was stressful and exhausting and didn’t pay nearly enough in actual money or in job satisfaction to make it worthwhile for longer than that, but I managed.)
I could say all these things every time I mention my disability. Qualify it, balance it against all my skills. But I shouldn’t have to. I know that shouldn’t be necessary. I still worry that it might be, that an employer is going to be prejudiced against me over it. But that is probably not someone I want to work for anyway, right? We’re supposed to have reasonable accommodation for disabilities. And my religion is committed to social justice and diversity and should therefore be more open than others might be to accepting people with disabilities in ministry. I should at least get a chance to explain, shouldn’t have to hide such a big part of myself.
Also, covering up my disability because I can, because I can pass for “just kind of weird,” is not good advocacy. So what if I wasn’t so good at covering up my limitations, if I was more obviously disabled? Wouldn’t I still deserve to be treated with respect and given a chance? One of my top priorities in ministry is better inclusion for people with disabilities. If I can’t embody that in my own life by being openly and visibly autistic, I think that goal is going to seem a bit hollow.
So I’ll keep writing about it. And try not to excuse myself every time I do. It’s part of who I am and a part of my work and I’m proud of it. Maybe to offset those concerns I still have, I’ll add a page on autism and/or my history. Or even just an “It’s my blog and I’ll squee (and stim) if I want to” statement to cover the toy stuff too. I don’t know, I’ll work on it.
In other news, I have no idea what my video for this month is going to be. Normally I’d have a loose script by now, but I’m kind of in limbo here. Considering possibilities for practicing children’s sermons, talking about advocacy and community, reviewing children’s books. I don’t really know what I want to do with it, other than that I want to keep doing it because I think the speaking and editing practice is helping me. And every time I do it I get more comfortable hearing my own voice and seeing my own face, which is obviously very important.
So I’ll find something to talk about. I kind of hate not having a set theme there, it makes it hard to feel comfortable setting the videos to public and treating it like a normal channel. And maybe that’s not something I actually have to do, but in an ideal world I’d like to feel there was more continuity with it. But I can take the time to experiment and find what works best, I don’t have to pick that theme now. Just living with the uncertainty here and sharing it with all of you. If the videos currently seem kind of random and disconnected, that’s only because they are! It’s a work in progress. Like me. 🙂