Tuesday, April 26, 2016

I Don't Use a Phone

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, Amanda Forest Vivian talks about why, no, she really can't use a phone -- and how reluctant other people can be to respect and accommodate her on this matter:

Design by The Dusty Phoenix
[image: White iPhone case
with illustrated narwhal design.]

Amanda Forest Vivian
adeepercountry.blogspot.com


I, an adult person, do not use a phone even though I can speak orally. In fact -- and I'm really letting the team down here, according to a certain kind of motivational speaker -- I can't use a phone.

If you're anything like me, you have had the idea drummed into your head that you should never use the word "can't" unless it is literally true -- not just literally because there's nothing figurative about my inability to use a phone, but until your tongue has been cut out of your mouth, you can't type into an AAC device that will electronically voice your words into the phone, and in fact, all phones have been destroyed in the revolution.

At the very least, many motivational, "positive thinking" types of people consider it to be lying if you say you "can't" do something that you can (according to them) do. At the most, they find it infuriating. I can't count how many times I've heard that certain type of person say, "It makes me really angry when people use the word 'can't'."

Well, it makes me really angry when those people say that. There is no way to get my motor running faster than to say, "Oh, sure you can--just try harder," "Just get up a little earlier," "Just spend a little more time on it." Why don't YOU spend a little more time on it?

And by "it," I mean understanding that "can't" is an important word and banning it doesn't do any good. It just creates inefficient situations where people are in denial.

I used to use a phone a little more because my position was that I "could" use one. However, I frequently ran into problems when I was not able to communicate or understand people on the phone, or when -- despite deciding I would make calls -- I just could not bring myself to do it.

A few years ago I made the executive decision to start saying that I couldn't use a phone instead of saying that I could use one. The only change was in the label, not in my abilities. Well, there was another big change -- I made plans and decisions based on my inability to use a phone. So things have only been looking up.

The Score

How come I cannot use a phone? There are two pieces to this:
  1. Anxiety/movement. I just cannot bring myself to make phone calls
  2. Processing. I'm physically able to pick up a phone when it is ringing, even though I cannot make phone calls. But I still don't communicate very well, because I process pretty slow anyway, it's harder to understand people on the phone, and my speech is hard to understand too.
In real life, I have two options for answering a question: immediately, or correctly. If I answer right away, just any random thing will come out on autopilot. In real life, though, you can at least pause a little and the person can see you're thinking. But on the phone, they will think you hung up. So, I can't stop myself from just autopiloting and producing any answer that sounds acceptable, even if it isn't my real answer.

Fairly or unfairly, I feel like people are just waiting for proof that I'm lying about not being able to use a phone. Of course proof like that is readily available, because there are times when I can use a phone. Sometimes if the conversation is going to be very simple and I'm also calling a friend and I'm very relaxed, I can make a phone call. It's really stressful because I feel like when people see things like this, they will hold it against me the rest of the time.

The Setup

I officially decided to stop talking on the phone when I was working for a home care agency. They would often call me to ask if I could go to work for a client in the near future, like in the next few hours. Not having enough time to think about it, I'd always say yes. So I'd end up working with clients I wasn't really suited to, in places I might not even have enough time to get to, and without having time to adjust to the change of schedule. (The day before is really the latest someone like me should ever make plans.)

At first I tried to cope by always saying "no" instead of "yes," but this wasn't great either since I didn't get any shifts. So, I took the plunge -- I told my job that I have a processing disability and would like to only be contacted by email or text. I changed my answering machine to say that I don't use the phone, and listed alternate ways of contacting me.

Pretty soon, someone at the agency forgot and tried calling me on the phone. I sat there and ignored the phone call until, eventually, an email arrived about the shift they wanted me to work. I still work for that agency sometimes, and I haven't received a phone call from them in years.

Dealing with medical things was harder -- well, it would be, except that when I "could" use a phone, I did not go to the doctor or dentist for more than a year since I couldn't make appointments. Now, I can go.

I am a personal assistant for a severely disabled lady and I spend a lot of time with her family. Her dad, Richard, is very good on the phone and has gradually ended up in the position of making appointments for me and helping me with things like changing my insurance. I used to feel guilty about this, but I have to admit there isn't a better option, and it wouldn't be good for their family either if my health wasn't being taken care of.

In some cases, if someone else makes phone calls for you, you will have to fill out forms -- or your doctor or insurance company won't be allowed to talk to them. The forms aren't too much trouble to fill out, but there can be a problem if your usual phone person isn't there to help. For example, my clinic admirably refuses to let anyone besides me or Richard change an appointment time, so once when he was busy and my boss's mom tried to call instead, they wouldn't talk to her. (In this case I was able to get on the phone since the call was already started, and it was a simple subject.)

When I wanted to try therapy, my roommate Rachel had to write down a bunch of stuff about me so she could call a counseling center and do the intake interview, where they would usually ask the client about themselves. Thanks Rachel!

In some cases, I can go in person, like going to my clinic to change an appointment time. It's time consuming but I can do it by myself!

Sometimes the whole setup is not successful. For example, once I didn't answer a lot of calls from a number I didn't recognize, and it turned out Comcast was about to shut off our Internet. I guess they didn't listen to my answering machine message about how to contact me.

Most things are not accessible to people who can't talk on the phone, which I guess is something that you don't think about if you can talk on the phone. I have to admit that I am not as functional, not using a phone, as I would be if I could use a phone -- but in reality, this isn't the choice I have. I can come up with alternatives to using a phone, or I can silently be unable to access things because of course I "can" use a phone.