Tuesday, November 22, 2016

Orion Meets A New Tactile Music Experience: SubPac

I couldn't resist adding the following lines I came up with to the video:

"There's a new tactile music experience in the house...
It's boom in a packpack,
Power in a pack,
Subwoofer in a seat,
Bebop for the body,
tactile tunes for Orion!"


 The video description is in the information section under this video's original YouTube location. 

Wednesday, November 16, 2016

Accessibility Anxiety

A screen shot of a happy Orion and tired mom waiting in an exam room around 90 minutes past appointment time, apparently while the staff figure out what to do about a no-show interpreter and finding a VRI unit. There's more to the story of the no-show interpreter, one agency transferred all their contracts to a new agency during that very week. Problems arose, obviously! *frown*
(Image description: This timered selfie was taken in an exam room, the facing wall is white, ceiling is white, wall on the right is a dusty green color, a computer monitor sticks out of the white wall. A brown haired woman is holding on her lap her white-haired 6 year-old son who is happily hugging a piece of teal-colored egg foam. The boy is wearing dark green pants and just visible is the heel of one of his bare feet close to the camera.)

Accessibility anxiety.

Ever heard of that? This term caught my eye when it was brought up in my community- the Deaf Community. It's for worrying about any form of access- communication, physical, whatever barrier that usually is and should be there. This, I can see applied to any disability. Will an ASL interpreter be present? Will they even be certified and qualified interpreters? Are there strobe fire alarm lights in this hotel room? Will it be wheelchair accessible? Will I have to roll through mud? Is there a ramp next to the flight of stairs so I can enter where everyone else will? Is there a braille label for the women's bathroom and the men's? These are just some examples I could think off the top of my head.

Today, I called to confirm Orion for an appointment tomorrow with a new speciality doctor.  This was a new speciality to add to Orion's list- Physical Medicine and Rehabilitation, a.k.a. "PM & R". The receptionist pleasantly said, "Don't worry, we called that number and got confirmation that an interpreter will be here tomorrow."

The last two Dell Children's visits, both during one week in September failed to produce an interpreter and they pulled in VRI (Video Remote Interpreting) iPad/tablets that had serious technical problems both times. What happened both times were the same problem- the interpreter in the iPad could not see me but I could see them. How could they see my signs? I salvaged the situation by speaking to the doctors and nurses and looked at the VRI interpreter/tablet to sign what the spoken responses were.

Hospitals and clinics like VRI, I suppose because it is cheaper. However, delays and technical issues happen often. I went to the ER once and rejoiced when they conceded the VRI was not working and called in an actual, in-person interpreter and that was another hour of waiting, sleeping on the exam room bed.

VRI is not even DeafBlind accessible- you can't tactile or improvise the physical situation for accessibility for the DeafBlind patient. The size and clarity of the image of the Lilliputian-sized interpreter is at the mercy of the 9-inch tablet. 

If a Deaf person is really sick, they cannot sit up or be coherent enough (mumbling signs, fighting pain, etc.) I've woken up from abdominal surgery wanting to be put back to sleep, I don't even remember an interpreter in the room! A VRI would have had a heck of a time reading me in that state. I know there was a live interpreter because I put my foot down before the procedure, delaying the start by a couple hours, that I would have nothing to do with VRI.

As for Orion's doctor's office visits, I often wished I had a second person in the room with me- Thomas, an intervener, or a friend- so I could sign easily, without wrangling our restless Orion who's had enough of this boring little room with nothing to touch.

"Still," I asked, "is it a live person, right there in the room with us? I don't want VRI."

"Don't worry, an interpreter will be here tomorrow."

That still doesn't answer my question. I could only wonder if the receptionist could differentiate between a "live, in-the-room interpreter" or a VRI interpreter? I settle for a wait-and-see approach.

Sighted, hearing people don't have to deal with accessibility anxiety. *sigh* I don't envy my neighbors one bit but sure wish our society was accessible for ALL people. ALL.

Update, 11/17/2016:

We got one of Austin's finest... in the room! (Interpreter, that is.) I felt I was able to express all my concerns and observations, the doctor asked thoughtful questions including one of my favorites which makes him an awesome doctor in my eyes: "Other than food, what motivates Orion?"

Motivation.

Doc knows that likes and dislikes are important to consider for each individual child. I couldn't help grinning and feeling thankful for the reminder.  Oh, and to his question, I answered, "Water."