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.


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.


I’m participating in Inclusive Design 24 thanks to the Paciello Group and sponsors. I’m making my slides available in .pdf format so you can use the links.

Pain Slides (.pdf 2MB)


This transcript was generously prepared by Stéphane Deschamps @accessiblestef on 21 January 2019. Thanks Stéphane, merci beaucoup!

Joe: This is a presentation entitled “Pain.” I am Joe O’Connor and I can be reached at @accessiblejoe on Twitter, and accessiblejoe.com/pain is where you can download the slides.

In preparing for this talk, I dialogued with various people on Twitter and I got this comment:

“Thank you. It’s discouraging to read accessibility literature that doesn’t acknowledge pain (and the exhaustion caused by chronic pain) as a major factor.” – Master Work Consulting @mwrk

“In the United States alone more than 100 million people experience some form of pain that lasts from a week to years.” – US National Institute of Neurological Disorders and Stroke

I had a stroke in December 2015, and I have some speech impediments and various other problems caused by the stroke.

Fifty million, in the US alone, are in persistent severe pain, and I’m in that category. I have been in constant pain since May 2017.

If the person in pain can communicate, they’re asked to rate pain from one to ten. So the question is put: “What’s your pain level today? Five? Eight? Ten?” It could be ten.

An observer rates the face of the person in pain using the Wong-Baker rating scale. This is a chart.

Universal pain assessment tool: no pain is zero, moderate pain is five, and the worst possible pain is ten. On most days I’m an eight or nine.

Underneath is the Wong-Baker faces pain-rating scale: a smily face for zero pain, it hurts a little bit, hurts a little bit more, hurts a whole lot, hurts worse, is crying, tears, down-turned mouth, down-turned eyebrows, drooping eyelids. And if you’re Irish, you’ll be laughing through the whole thing!

There are no other measurement tools. Misinformation abounds!

This is racist propaganda encapsulated in a Pearson –of course it’s Pearson– textbook, nursing textbook widely distributed and used for years, a chart called Focus on Diversity and Culture. I’m sure somebody thought this is a good idea. Cultural Differences in Response to Pain. And it lists Arabs/Muslims, Asians, Blacks, Jews, Hispanics, Native Americans, although this doesn’t include some other categories. I’m being careful about the words I use here.

“Catholic Hispanics may turn to religious practices to help them endure the pain.”

“Jews may be vocal and demanding of assistance.”

These are racist stereotypes.

This is an article: “Learning from Pain – On living a continuously interrupted life.”by Quinn Norton. This link was found for me by Jennifer Sutton; thank you Jennifer for always keeping me in the loop.

Palliative care is inadequate… and dangerous.

Now when we are in pain, treating the pain is sometimes essential. There’s an excellent video, by Kate Nicholson, a brilliant civil rights attorney, who did much of her work incapacitated by pain. Lainey Feingold sends her regards to Kate! This video can’t be missed. There’s a video at TEDxBoulder.

In the United States there’s an opioid commission, and the headline is “Opioid Commission Mistakenly Blames Pain Treatment for Drug Deaths”(Jacob Sullum in reason.com).

Another headline: “Eliminating Opioids for Chronic Pain Unwise?”  Now I don’t take anything that affects me from the neck up, so I’m not directly affected by this controversy. This is an article by Pauline Anderson on Medscape.

“The Myth of an Opioid Prescription Crisis”, by the Cato Institute. The idea that all these opioids flowing through backdoor channels is because of prescriptions is a myth.

“The Sackler dynasty’s ruthless marketing of painkillers has generated billions of dollars—and millions of addicts.”The Sacklers own Purdue Pharma which makes Oxycontin. This story is in the New Yorker.

So Patrick Burke talked about the energy drain when faced with crowdfunding sites for charities, and I agree that everyday experiences take some energy. And if you are disabled, more energy.

Now some experiences however are not apparent that you’re expending energy. I worked in the film business for a long time (theatrical motion picture post-production), so I know that at 24 frames per second the double shuttering action (48 apparent frames per second) of a movie theater’s projection system meets the flicker fusion threshold. Now with a high-speed, high-frame rate projection, in many theaters this is less of a factor. Thomas Edison recommended a speed of 46 frames per second. He said “anything less will strain the eye.”

So indeed, it takes some amount of energy to sustain persistence of vision when watching a projected 24 frames per second movie. It takes just a little bit of energy, so there’s an energy drain in everything.

But everyday experiences take some energy – living with extreme pain takes extra energy. Navigating interfaces reveals a great deal of friction that takes more energy than is available.

There are many choke points. Computer interfaces present a constant series of choke points. It’s almost impossible to complete transactions. Just moving around the Web takes too much energy. When you’re drained by so much pain, just moving around takes too much energy.

Reduced energy levels require strategies. Not being able to sit at a desk may mean more reliance on mobile. And indeed, I rely on my phone quite a bit. It’s a large phone, but it’s nothing compared to large monitors and large displays that we use at desktop or laptop computers.

Use of mobile devices is difficult, with small targets and fonts, and oh, the gray fonts – gray on gray, cut it out. There are also some unintended link and button presses: I’m trying to get into a comfortable position and the phone gets out of my control, or my teeth are already chattering from the pain and I click on something that I didn’t mean to, and I’m off in a different direction – and I just don’t even know sometimes how to get back!

A very busy environment saps energy. Banners, pop-ups and overlays. Persistent headers, footers, and sharing buttons. All of these contribute to energy drain.

Some sites require accounts. Passwords and security questions must be remembered. CAPTCHAs defeat users. Prop up an iPhone in front of you when you’re laying down, trying to get into a comfortable position, and do the “I’m not a robot” CAPTCHA. Find the pictures with roads in them! And they’re just crazy pictures. Of course for blind users, that’s not even an option.

Security is the enemy of usability. And they don’t even need a CAPTCHA sometimes – most of the time. Use a honeypot.

Ditching sites as unworkable is a frequent occurrence. You go to a site: popup! “Subscribe to our newsletter!” Hmm… Well, I haven’t been to your site yet, at all, ever, once! I don’t know what it does or what it says! Do you really think I want to engage in your newsletter? No! No, no, no. Ditch the site. Even if I need the information, even if I want the information, I will ditch the site. It’s unworkable.

So what can we do about all this? This is a section called “Signs and Portents”.

There are some good signs and good ideas, that there are solutions to be had; some of them off in the distance, some of them right now.

In healing, “A Textile Dressing for Temporal and Dosage Controlled Drug Delivery”is a paper in Advanced Functional Materials. I contacted with one of the principal investigators and said I was interested in any trials that they may be having but they’re not ready yet. But instead of treating the entire body with dangerous opioids, delivering drugs directly to, in my case, open wounds that won’t heal since May, a textile dressing for temporal and dosage controlled drug delivery has good promise.

Passwords: “Clothes made from a data-storing fabric will remember pass codes for you” – an article in Quartz. Far-fetched? Hmm, I don’t know. The drug delivery bandage might have a chance.

So, notifications. I don’t want notifications at all. If I go to your site and I clear the “Sign up for our newsletter!” and then I get “Do you want us to remember your location?” No, never. Never, never, thank you very much! “Do you want to turn on notifications?” About what? Again, I haven’t been to your website, what are you talking about? In Chrome, if you go to the Preferences, Settings, Advanced, Content Settings, Notifications, you can toggle “Ask” to “Blocked”.

Now I use security. It’s nothing compared to – I’m sure I’m being tracked anyway but just for the sake of argument, I use a VPN to prevent some tracking. Most tracking software tracks you, collects your data and sells it. We live in an upside-down, backwards world, Bizarro world, where on Wednesday garbage is delivered to your house. Now all the VPNs – TunnelBeardoes not keep any info or sell user data. Others do. I’m not sure of their claim, I can’t verify it myself, but they seem to be making strides in that direction.

This is an interesting concept: Tor is based on Firefox, the Firefox engine, and Firefox is getting a Tor-based security upgradein January of 2018. This is an article by Tristan Greene in TNW.

Content blocking, this I need. I use it to calm the environment and prevent malicious tracking. Here’s something called Unobstruct, an iOS Safari content blocker that kills sticky headers and sharing buttons. Not on all sites but I’m looking at a phone limited real estate, sticky headers descending from the top, sharing buttons floating up from the bottom, very little room to read. This is a good thing. If I want to share the site, I’ll copy the link and share it on Twitter, or put it in this presentation!

Adware plus, I use that to block annoying ads, disable tracking and block domains known to spread malware. Adware plus for desktop or laptop is cool, but I don’t use it on mobile because it requires their own browser. What’s up with that? Get out of here! (Note: since this talk they have released mobile apps.)

So I’m positing the promulgation of a privacy shield to combine some of the separate parts I just mentioned, standardize (hello W3C!), add profile elements as you want and not as the website demands. And allow select access to very narrow profile info –none at all when you’re just browsing around– with a user centered password. I do believe this is the time for user-centered passwords, where the site does not collect your password.

You have to breathe in and out, no out-of-body experiences now, suspend your disbelief. This is what I’d like to see. Not life-threatening. User-centered password.

When the pain marker is present, provide UX to match. Or a cognitive marker. Or any other marker that you want.

I know, tracking, tracking everything, is a problem, but this is what I’d like to see in a privacy shield.

So, in preparing for this talk, again, I was having some discussions on Twitter and Denis Boudreau and I talked about being disabled. And I couldn’t for the life of me imagine myself as being disabled. I know people – my own daughter for instance, is severely disabled. I know people who are far more impacted than I am. So I didn’t count myself as being disabled. But Shelley Powers notes: “Disabled means having a mental or physical condition” – if you had to live with me you’d know my mental condition is not that great. A physical condition? Yes I have a physical condition, great pain. – “that limits movement” – yes it limits my movements – “sense, or activity.” – activity, yeah. My activity’s way down because it’s very difficult to get around in the physical world there are all sorts of choke points, barriers everywhere. So she says “This is a statement of fact, not a dismissal.” So I had a realization that my ableist brain was preventing me from seeing that this is just fact, not tied up in ego or anything else. Very interesting, thank you Shelley.

And finally from Emily Ladau. “Hello. I’m disabled. DISABLED. Please don’t use euphemisms to refer to me. I’m not: challenged, handicapable, differently abled, special needs, and apparently we need to add specially abled to this list now.”

So thank you all for the conversations on Twitter and that’s the end of this slideshow.

Léonie: That was a truly thought-provoking talk Joe, so thank you so much for sharing your experiences and your advice and guidance around the topic that I think doesn’t really get any air time very much. It’s certainly not something I’ve ever heard anyone talk about before, and haven’t read much on the blogs and other places. So I think it’s really great that you’ve shared this with us today, thanks Joe.

Joe: You’re welcome. Are there any questions?

Billy: I haven’t seen a lot of questions on Twitter. A lot of comments, one person recommended a book: Charles Hall asks if you’ve heard ofCommunications Technology Handbook, 2nd Edition by Geoff Lewis(O’Reilly). I guess your comment about needing to calm down your environment, which by the way was a fantastic way of putting it, sort of reminded him of that book, so he sent it out to know if you’ve heard of it?

Joe: No, but thank you. I’ll take a look.

Léonie: It was interesting for me, the things you mentioned about the 24-frame projection, it had never occurred to me that something like that could affect your experience; the amount of energy it takes to watch something or engage with it, you know. That was startling to me, especially I suppose because I don’t see at all. You know, the notion of something being hard to watch or energy-draining to watch was quite remarkable.

Joe: Well I’ve spent a number of years in Hollywood, so I’m up on the technology.

Léonie: Hah! I didn’t know that!

Joe: I worked in Hollywood, I worked on Annie Hall, all the way up to, Deer Hunter I guess was the last one.

Léonie: (laughs) That’s very cool!

Billy: Now I know what I want Joe to talk about next year (laughs)!

Léonie: Right! We want the inside scoop on your Hollywood years!

Joe: It was mostly chasing producers down alleyways trying to fish checks out of their pockets!