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CSUN 2018, A Spoon Too Far

First Contact

In March, 2000, I went to the California State University Northridge’s Center on Disabilities’ 15th annual international Technology and Persons with Disabilities conference, known as the CSUN conference.

It was at the Hilton Los Angeles Airport and Los Angeles Airport Marriott Hotels, California, about a 20 minute drive for me.

I didn’t attend the conference, I went to the exhibit hall looking for assistive tech for my non-vocal daughter, Siobhan, who was communicating confidently using the Picture Exchange Communication (PECS) system with cardboard icons in a Pyramid communication book.

In the Future, Computers Will Make Our Lives Easier

I heard of speech generating devices but wasn’t sure that introducing that level of complexity would be productive. Tech takes energy to program and maintain, and I had my doubts. Don’t forget, we had just gone through the Y2K debacle, which near as I can tell erased much of the productivity gains made by using computers in the first place. I had my first internet account in 1989 and I’ll tell you, we were productive. See alt.devilbunnies.

I was into my second year of leading web teams making accessible web sites for Pasadena City College after being in computing for nine years. I knew that when you needed tech the most it sensed your need and froze or the power went out. At one of my systems-admin jobs we had tiki gods protecting each server. I still have one in our family room, a spectacular three foot African head. We were serious. But for Siobhan we needed sustainable, stable tech that would survive an earthquake if needed. The paper-based PECS system was stable and needed no batteries. Six days into an earthquake-caused power outage would have almost no impact on operability.

Nonetheless, to this day I leave no stone unturned to help Siobhan.

Astounding Science

At the exhibit hall I was astounded by what I found. The most interesting was that a company called DynaVox was about to release the DynaMyte 3100. With a small form factor, powerful speakers, and ruggedized case, it seemed to be the device for Siobhan.

The DynaMyte would use symbols by Mayer-Johnson. This was the Picture Communication Symbols (PCS) that we were already using for years and which worked best for Siobhan. This was excellent. Yes, there was a built-in battery, not reliable in a sustained emergency, and it was four and a half pounds so Siobhan could not carry it and use it at the same time. The good news is that we would have the freedom to do the layout to approximate the communication book ourselves. The DynaMyte was very interesting and two years later Siobhan was using one. She’s now on her third DynaVox device, the Xpress.

A portable speech generating device is the essence of a life changing technology. This is what the conference and exhibit hall mean to me and my family. Life changing.

An Honor To Serve

In September of 2005 I was asked to help make the web accessible at California State University Northridge. Since I already had a deep appreciation for the school that produced the CSUN conference every year, I considered it a high honor to serve. I attended my first conference as a staff member the following year in 2006. While listening to all the great speakers I realized that my accessible web team should be contributing. I think it was for 2007 that I did a proposal and was accepted. I believe I’ve attended and spoken every year since 2007.

High Points

I have had some memorable high points like the time I presented with Dennis Lembree about his accessible Twitter web client. Dennis is a shining example of accessibility practitioner and all-arond wonderful human being. A mensch.

And nothing will ever beat the high point in my entire presenting career when Glenda Watson-Hyatt @GlendaWH allowed me to present with her about the use of speech generating devices and how some users needed to use PECS methodology as a foundation, while others with different cognitive abilities don’t. Glenda is a stellar presenter. Some of the participants at that presentation had life changing experiences. Ask Glenda Simms the @goodwitch about it.

Shared Experiences

Glenda and I went out to eat once in San Diego and on the way we saw a power wheelchair user flying a warning orange flag flapping in the breeze zipping along doing about twenty miles per hour down the sidewalk. The whole chair did a little hop when the driver took the curb-cut at speed, and proceeded to cross the intersection without slowing down. It was a very serendipitous sight. We both came to a stop to share this moment and watch the woman recede into the distance at a rapid clip. What can you say? It is shared experiences like that which mean so much to people who are often isolated in their lives. They make CSUN especially powerful to the community of people who gather there each year.

Planning A Presentation

Planning a presentation proposal for CSUN takes some effort. What can I cover that hasn’t been covered before? What is my experience telling me about augmentative and alternative communication or web accessibility that will still be relevant in about five months time? What do I have to say that is unique, why should I be the person telling this story, what can I bring to the conversation? This year I also had another issue to deal with.

Spoons

In April of 2017 my health took a major turn for the worse. Due to complications from a hospital stay and a long term condition in my left leg I developed excruciatingly painful burning spasming chronic open wounds. Despite the many doctors I’ve consulted and the wound care specialists I’ve seen the wounds have not progressed toward healing. Because I don’t take any drugs that affect me from the neck up I have steered clear of pain treatment with opioids, so I live in excruciating pain around the clock. There are some major life adjustments I make to gain minor pain relief, but I’m still faced with an immense energy drain. I like the spoons analogy: I get a random finite number of spoons to get me through the day. When the spoons run out, I’m done for the day. Some days I have enough spoons to make it through the day, some days I don’t. Today I had one spoon and wrote most of this on my phone in bed with the electric mattress cover keeping me warm. No spoons means no activity. I ascribe this setback to a new drug I took yesterday that probably is the cause of maximum pain in my liver and kidneys. Now I hurt egregiously in two areas. Not progress. Called doctor, agreed to stop new drug. One spoon today.

Now I Knew Everything About Pain Except Why It Hurts

That was the title of the CSUN conference proposal I did last October. I didn’t apply lightly, I thought very hard about the pain and where I might be by conference time. I booked a room at the conference hotel so that if need be I could rest my leg until presentation time. I’m very actively seeking a cure. I put in the proposal and was accepted.

But now I’m looking at my situation and the average number of spoons I get and I’m afraid. I can’t do the two and half hour drive by myself, and other means of transport will take more energy than I have. This means in my current state of health I can’t present and my health has not shown much signs of improvement. So I have to contact the conference people and tell them I can’t do it. There’s another complication too, but I’m too drained to continue. I did a presentation about pain and possible changes to interface design at ID24; please look it up. You can read the slides from that presentation if you want.

Members of Congress can send me prayers and thoughts, the rest of you might want to share actual thoughts about this at @AccessibleJoe on Twitter.

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Stroke of Solstice

Winter Solstice 2015

Linda and I have been hosting “dinner with Siobhan” each Monday night for a while now. It’s a way of keeping Siobhan in touch with her friends. A couple of her friends have gone off to college and during dinner we video conference with them. One extra special good friend always shows up, and we occasionally attract other people who can’t make it regularly. The dinners are a way to provide Siobhan with variety in her weekly routine while letting her know that her friends care about her. Her cognitive disabilities mean that she can’t text back and forth with them but she can participate in video conferencing and loves it when people are here. This past Monday, December 21st, we had an exceptionally lively party with lots of people here. I made a big pot of my special meatballs, sausage and sauce. I cooked up a big box of De Checco angel hair (capelini) number 9 pasta, and we had salad, ginger beer, and sparkling cider. At 8:49 pm PST, the stroke of the Winter Solstice, I got a wonderful solstice card and we distributed some gifts, but not all gifts, since some were Christmas gifts. It takes a little extra thought to live in a mixed Solstice/Christmas family.

The Next Day

The next day dawned like many others. Hours of getting Siobhan ready for her day program, bustle around the kitchen, showers, checking schedules, getting ourselves ready for the day. Siobhan had an appointment at 3:00 pm in Beverly Hills at Lerman and Son Orthotics and Prosthetics for an orthotic fitting. She returned from her day program at 12:30 pm, I fed her lunch and eventually we made our way to Beverly Hills. Linda joined us directly from work and we did the appointment together. The fitting went well and now Siobhan has new Cascade DAFOs for her feet. Finished, we went out on the street and I said something to Siobhan and noticed that I was talking differently. We came in two cars, and Siobhan elected to ride back with Linda so off they went, closely followed by me. In the car I began experimenting with speaking. I wasn’t doing too well. My speech was slurred. I was in trouble. We arrived home quickly and I indicated that Linda should call my cardiologist. She looked up the symptoms on a medical info card she keeps handy in the kitchen and concluded that I had one of the symptoms of a stroke. Thanks Linda, for being so smart and taking decisive action when needed. Linda and Siobhan took me to the emergency room at St. John’s Hospital here in Santa Monica, where staff started evaluating me immediately. From the time of first symptoms to the time of first evaluation was about an hour. This turned out to be a crucial point.

Just In Time

As happens so often in this world, exact timing is very important. This has always been a bother to me. I have a diffused sense of time. I like to think that centuries of farming in my dad’s family have imprinted on me in some ways. Things in my time mirror appear longer. I also wonder why so many things start early in the day. From this you can see I’m not really cut out for reporting for work at a physical location. My dad always said about me: “he loves his job so much he’d lay down beside it.” But in this one special case, the case of getting me to the emergency room quickly, even I could tell that it was essential to do so. As it turns out, we arrived just in time.

Communication Rights

The evaluation team grew until the emergency room bay I was in was wall to wall people. As the assembled multitudes began to interrogate me they quickly decided that it was easier to get their information from Linda. Linda and Siobhan were outside the bay door and Siobhan was looking very upset. She normally does not like hospitals; she really doesn’t like hospitals when I’m the patient. Someone would ask me a question. Someone else would ask Linda. Linda answered, and then someone else would ask me another question. My communication rights went right out the window. I was reminded of Glenda Watson Hyatt’s life long struggle with being cut out of conversations with doctors because she is speech and language disabled. Some of the answers were being handled well by Linda but when she didn’t know something or had it different than I knew it to be and I had the answer the team was still deferring to her. In one instance I shouted to make my point. All heads swiveled in my direction, for an instant, and the cycle started over again. Frustrating.

Neurologist

I don’t know when, exactly, the neurologist arrived on the scene but when he did things got dramatically different. I will omit some details here because this is not a doctor show. The neurologist told me that a quick CAT scan showed no evidence that I was having a stroke but they were acting as if it were a stroke and there was one treatment for it, and it was essential to treat me immediately. This is where that timing thing comes in. The treatment had to be invoked quickly after first onset of symptoms. Later and the risks were greater than the cure. I chose to have the treatment.

Tissue Plasminogen Activator

This may not be a doctor show, but this detail is important. The treatment is known as tPA which stands for tissue plasminogen activator. There are guidelines for when to administer the treatment and by the time I was treated I was still well within the early window of opportunity. Also known as the clot buster, it broke up any clots anywhere in my body. There are more details such as possible side effects but I’m here at home on Friday typing away as if nothing happened. The only noticeable effect is my speech, which sounds slurred to me. The diagnosis dealing with my speech is dysarthria, resulting from neurological injury of the motor component of the motor-speech system. The doctors and speech and language pathologist all agree that I will probably lose the dysarthria entirely in a short period of time. I hope so. In the meantime I’m glad things turned out the way they did.

Discussion at @AccessibleJoe