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

Cataract

Text Zoom

Beginning in about April 2014 I started to experience the sensation that there was something in my right eye. I examined the eye in a magnifying mirror but nothing was visible. The feeling persisted. I wasn’t having any other symptoms so I just went about my business. By the summer the right eye was definitely different than the left eye. I attributed it to the prescription for my reading glasses. I am stoic. If I get a rare ache or pain, I debate so long about taking something for it that it usually goes away. The eye problem wasn’t going away, but I had many other things to attend to so I resized the text and moved on. I even bought an iPhone 6 Plus so I could get the text large enough. Note to site developers that don’t allow text resizing: I try to resize text and if resizing is disabled I immediately leave. Please note that what I mean is text resizing, not page zoom. I’m asking you to make sure that the text in your site reflows properly when the text is zoomed. If your site doesn’t allow that then I’m not reading your content. When my vision is better I’m still not using your site out of solidarity with those who need this basic accommodation.

Diagnosis

“Cataract is the leading cause of blindness worldwide, and there are more than 24 million Americans age 40 and older who have cataract in the United States alone.”Leading Cause of Blindness Affects Millions by Prevent Blindness

I have a habit of seeing an eye doctor in November each year and by that time things were getting dimmer in addition to out of focus. In fact, by that time I couldn’t see any of the letters on the eye chart at all. With my left eye covered all I could see was a blur. The best correction could only get me to 20/50 in the right eye. I was diagnosed with cataract and got a referral to a surgeon.

Baloney Institute

When looking for a doctor I generally look for what I call a “mad scientist.” This is someone who is brilliant and can use techniques that no one else seems to know about, but is down to earth and probably a bit quirky. I have a brilliant periodontist who performed micro surgery under one tooth, saving it for another ten years. She competes worldwide with her agility dogs. My foot doctor takes his six dogs to the office every day but seems to come up with interesting new ways to keep my feet feeling great. Both of them have modest offices. So that’s what I was looking for when I fetched up at this very slick double-door-entryway suite with the two hundred thousand dollar interior. My eyes were immediately drawn to the black-clad hard-bodied staff all lined up behind the counter with perfect broad smiles each saying welcome in their turn. I was reminded of the siren scenes in “Ice Age: Continental Drift” which scored very low on the tomato meter but which my daughter loves.

Options

The intake questionnaire was a brilliant piece of user experience chicanery. It was designed to funnel you down to the most expensive eye experience you could ever imagine. If it had one more question it would have been perfect: would you like your eyes to glow like Satan? After five minutes with the doctor I concluded that this was probably not the practice for me. On a break from the ordeal while he checked on my wallet biopsy I could see a patent award framed on the wall for something to do with lasers. With a broad grin at the results of the wallet biopsy he came back for the kill. The laser treatment was sure enough on his mind. I opted out. The look he gave me reminded me of the Taiwanese movie producer I held the movie negative on, forcing him to pay me. Joe, he said, what’s wrong? I thought we were one big happy family. I seem to remember that none of the other family members got paid, by the way. Anyway, when I opted out of the laser treatment and he agreed to use the ultrasound lens liquefaction method I could see the avidity die in him. Then, since the fancy interocular lenses were astronomically priced I opted out of all but a basic lens. When I arrived at scheduling I was told that because the ultrasound technique takes so long and is so involved that they only schedule it at the end of the day. This is unworkable for me since I’d have to be fasting all day. I was so done with them that I don’t think I had the opportunity to ungreet each and every smiley faced staff member on my way out.

Mad Scientist

After this I was at my periodontist for a cleaning and happened to mention that I was in need of cataract surgery. She produced a card for an eye doctor she uses. Aha! I made an appointment. There I learned that the ultrasound liquefaction surgery and lens implant procedure takes five minutes. I also learned that the top of the line Tecnis Multifocal interocular lens implant was far less than previously quoted. Plus, I suspected that this obviously smart woman was probably a mad scientist. I suspected this because she was personable and extremely capable and instead of having an assistant do it like at the Institute, she did the exam herself. She also explained what was going on.

Cataract Explained

She explained that the lens sits behind the cornea and the iris and is made of water and cleverly arranged protein to keep the lens clear but which can become clumped together causing cloudiness. Yellow-brown pigment is also deposited in the lens which will ultimately turn black causing blindness. My lens was dark honey colored, making it an advanced cataract. The doctor told me that years ago the only surgical technique was to remove the lens, letting unfocused light in. This happened to her mother, who was very incapacitated despite very thick glasses. Is this why she became an eye doctor? I find that many accessibility practitioners have family members or friends with disabilities and that’s why they got into the field. Fascinating.

Surgery

Yesterday morning I reported for surgery. I found the procedure interesting. They put numbing drops in my eye and sedated me just enough so I didn’t feel anything but could still see. Then came the interesting part. I assisted at various times by looking at a gray spot in the center of a ring of light that surrounded the microscope they used to do the operation. I felt nothing. They were done in a few minutes. Old lens out, new lens in, and then back to recovery. I went home with an outsized bandage on the right eye with many instructions.

The Reveal

Today I saw the doctor at her office where she took off the bandage. The difference in vision in the eye is startling. Before the surgery I could only see a blur where the eye chart was, today I tested at 20/25 on the same chart. I can see clear bluish light whereas before, everything was cloudy and warm toned. My left eye, which was my good eye, is developing cataract and is now revealed to be very obviously cloudy and warm toned. Vision in my right eye will probably improve. There is a one month recovery time with many drops of three different prescriptions all day long. I probably won’t be skydiving at the CSUN conference, but then you knew that already, didn’t you?

You can talk with me about this or anything that happens to cross your brain on Twitter at @AccessibleJoe.

OpenAIR Competition 2014

A Plastic Brain

This year I volunteered to be an accessibility mentor to an Accessible Internet Relay (OpenAIR) project on Team AxIS and was surprised and pleased to be helping an advocacy non-profit run by Anne Forrest called A Plastic Brain in Austin, Texas. Like so many of us in the disability community, Anne advocates for people from personal experience. A Plastic Brain is for people with traumatic brain injury (TBI).

Anne “lives with persistent symptoms from a mild TBI that she received during a June 1997 car accident and continues to recover.”

Cognitive Connections

Nineteen years ago when my daughter Siobhan was just over three years old we finally got a diagnosis of Cri du chat Syndrome and I wanted to start an email list. Lacking my own server, I got a lead to The Brain Injury Information NETwork where, for free, they set up a list for me and I soon was communicating with people all over the world about the severe cognitive, speech, and motor delays common to Cri du chat people. I’m currently contributing to the W3C Cognitive and Learning Disabilities Accessibility Task Force and I also help out with the WordPress Accessibility Team. So when I heard that Anne is working on a WordPress site for people with cognitive issues and she herself lives with traumatic brain injury a lot of things just came together for me. I’m so very glad to be helping Anne and her husband Michael Crider because on so many levels there’s a personal connection. And like with so many personal connections in this distributed world some of us now inhabit, we haven’t even met yet!

Completing the Circle

Just to cinch the deal, the development team is part of Cognizant with headquarters in Teaneck, New Jersey. Where I was born. This is just wonderful! The development team is located in India and when we all had our first meeting I was very glad to hear that when clients require it, they add accessibility. Their team, led by Antonia Jayaraj and seconded by AnanthaKrishnan M (Krishna) also includes Aparna Rajan, Prasath Manoharan, and Renuka Subramani and they are all doing a great job and each of the team members, including Anne Forrest and Michael Crider have contributed multiple times to reaching milestones. The evening of our first meeting, for instance, Michael and Anne created wireframes and a day later the development team had a minimum viable product (MVP) up on a server in HTML. Wow! Go team!

Cognitive Challenge

So this brings me to the heart of the matter, which is the reason the team would like to win the competition. We’ve all done great things for vision, mobility, and hearing, but there isn’t quite as much research for cognitive disabilities. While the W3C cognitive taskforce is changing that, we aren’t done yet. Anne has done much to inform us about her needs and how she makes connections. For instance, she responds better to navigation on the left, so we’ve included that in the design. Low contrast allows her to function better, so though we are meeting the guidelines, the contrast is lower. If there are other OpenAIR teams dealing with cognitive disabilities the AxIS team wants to collaborate with you. I believe that winning will help focus attention on cognitive issues, and the work the international accessibility community needs to do on this topic will be advanced.

World Information Architecture Day 2015

Global Conversation

This past February World Information Architecture Day 2014 took place in 24 cities, 15 countries, 6 continents. These stimulating events bring together an international community of world-class Information Architecture minds including academics, practioners, technologists, and business leaders for a global conversation. In 2015 there will be more cities, more countries, more events.

Not A Surprise

I attended World Information Architecture Day 2014 in Pasadena. We were given real world problems to solve for some community based projects and broke into groups to come up with solutions. The group I was in thought up ways for the Los Angeles Metro to increase ridership. When I brought up accessibility within my group I found that very few people knew about it. This is not a surprise.

Search Where The Light Is

I started doing outreach here in Silicon Beach on Jun 2, 2012 when I started the Los Angeles Accessibility and Inclusive Design meetup group. I immediately started going to User Experience meetings and talking to everyone. There is a wise saying: start searching where the light is. In Los Angeles the light is in User Experience with thousands of members and hundreds of active participants in two major meet ups and other groups.

Persistence

At my first User Experience (UX) meeting I introduced myself to someone and she told me that she did user experience research and I told her that I do accessibility. The next thing I knew she had translocated herself to the opposite side of the room. I’m persistent. I kept at it. I announced my meetup events and other accessibility events such as Accessibiity Camp Los Angeles, the CSUN conference, anything I could use to get the message out that accessibility was important and needed and wanted by many people.

Awareness

By the middle of 2013, the beginning of my second year of outreach, I would introduce myself to people at UX meetings and there would be a pause. Then slowly the person would say: “Oh, you’re that accessibility guy.” This was a big increase in recognition. From translocation to recognition in one year. Branding helped: @AccessibleJoe. I kept working the rooms. Some Global Accessibility Awareness Days have happened. They were a big factor in raising awareness. Thanks Joe Devon and Jennison Asuncion.

A Big Deal

Due at least in part to my outreach work the need for accessibility is being recognized by a mainstream organization. This is a big deal. The Executive Director of World Information Architecture Day 2015, Lara Fedoroff, has asked me to serve as the World Information Architecture Day Accessibility Director. Whitney Quesenbery is also helping. Lara wants to build accessibility into the events from the beginning. This means creating accessible web sites, paying attention to physical needs at the venues, getting accessibility information to event planners, and embedding accessibility experts into each team in each city.

Offer to Help

The offer to help make World Information Architecture Day 2015 accessible in all the meanings of the word will take teamwork. I’ve contacted a few accessibility experts here in Los Angeles and asked them to help with some preliminary user experience research being conducted by Elisabeth Bentley. I’ll eventually be reaching out to the world wide tribe of accessibility folks before this is over.

LadderDesk™

Startup: LadderDesk™

Santa Monica, California, April 1, 2014

Announcing A Health Breakthrough

Joseph standing on a six foot ladder with LadderDesk trademark on one of the ladder legs typing on a laptop with trees in the background.
LadderDesk™ Glass

Today, LadderDesk™ is proud to announce a Kickstarter campaign to build the latest in health technology, the LadderDesk™. Science has documented the many health benefits of standing desks. LadderDesk™ improves on this proven concept using a technology specifically created for LadderDesk™ we’re calling Gravity™ to actually suck unhealthy vibes down and away from the body. Plus, users of the LadderDesk™ will benefit from cleaner air and a new outlook on life as they view the world from a new perspective. The LadderDesk™ is extremely portable as you can see from the action photo out in the Room With The Big Blue Ceiling. The model displayed in the photo, the LadderDesk™ Glass is also lightning-proof as it has fiberglass sides.

Disclaimer

Curiously enough, heavy weight operating systems don’t do well at the altitude at which the LadderDesk™ operates. Linux, for example, only made it to the first rung. We find that only ChromeOS or iOS are lightweight enough for the top of the LadderDesk™. For more info about LadderDesk™ Tweet @AccessibleJoe.