I haven’t blogged in a while. For the last seven years, I’ve been on an inward journey. Healing, evolving, growing. This may be me reemerging, I don’t know. I do know that I’ve survived trauma and the world is so full of it right now. And for some reason, I feel moved to talk about my own experience of surviving trauma and healing.
I have PTSD. Below I sketch some of the events that caused it. Given all that is happening in the world, so many people are coping with trauma. Invisible injuries need care just as physical ones do. How many people will get the care and resources that they need?
Many people will not even realize they need help. I didn’t. Not for decades.
Yet, one of the best things we can do for trauma is share our stories and for that, social media is amazing. I’ve been reading stories related to #YesAllWomen, #BlackLivesMatter, #CripTheVote, #LoveIsLove. This is how change happens.
Here’s my story. It’s about how I was brainwashed into silence, how music gave me a voice when I couldn’t speak and how I’m exploring sign language and music as a technique for reclaiming my voice.
If you or someone you know is struggling, you are not alone. There are many supports, services and treatment options that may help. A change in behavior or mood may be the early warning signs of a mental health condition and should never be ignored. There are many different types of mental illness, and it isn’t easy to simplify the range of challenges people face. – See more at: https://www.nami.org/Find-Support#sthash.U6TfXHfP.dpuf
Speak up. You don’t have to share it with every one on social media, share with one other person. Just don’t be silent. <3
Trigger warning: discussion of sexual abuse and sexual predators
In summer 1977 my dad, mom and I moved from Pittsburgh, Pennsylvania to Idaho Falls, Idaho. That autumn, my brother was born. My dad was getting up and out the door early every day to catch the (6 a.m.?) bus for the long trip out to “The Site”–the experimental nuclear reactor in the Idaho desert where he worked. My dad…wasn’t the most patient nor the most forgiving person…My mom was exhausted from being a homemaker and the sole caretaker of an infant and a kindergartner.
New job, new house, new city, new child. An isolated, dysfunctional family with a young daughter. The perfect target.
My dad became friends with a man, we’ll call him “Dave.” He was a charismatic mountain man. He introduced my dad to a network of vibrant, cool outdoorsy people. We started going on climbing and camping trips with them. We spent a lot of time with Dave and he was one of our main conduits to a sense of community. Dave had a bunch of interests and skills that made him very cool…and my dad admired him.
Two years later, I’m 8, and Dave and I have a “special” relationship, one that I was taught not to share with anyone.
At 9, I was adamant that I wanted to play the oboe. I’d heard it in a Mannheim Steamroller album that Dave gave to my dad. It was haunting and sad. It was my voice. That was my tone. And the only safe way to express the anguish that I was feeling. It was the beginning of my relationship with music and a variety of instruments: piano, bassoon, hand bells, xylophone, vibraphone, marching band bells.
At 11, I’m spending evenings with Dave and his friends. One evening, broke me. I fought but it was 3 grown men against me, an 11 year old child.
Around 14?, I performed Mozart’s Piano Concerto in D Minor from memory. I practiced so much that my fingers still remember the opening stanzas.
At 16, my family imploded. A nasty divorce, 2 year legal battle, my dad moved to Chicago with my brother, my mom was in the hospital close to death and Dave vanished. I was alone. I drank A LOT. I often blacked out.
Somehow, I was broken but not shattered. I excelled in college (while continuing to black out regularly and discovering weed). I stopped playing music. My friends were musicians, not me. Instead, I danced. I listened. I wrote poetry.
I lucked into an amazing career, I married and travelled the world (blacking out on four continents). I found yoga and running.
Then I got pregnant. And I couldn’t numb the pain anymore with alcohol or marijuana. I felt overwhelmed–a flood of emotions and I had lost the only coping mechanisms that I knew–drinking and intense exercise. I stopped working full-time. I wrote a book. I started working with a life coach.
But something had changed. All the anger that I had been suppressing wanted out. I would throw glass or ceramics and watch them shatter. It felt like a visual representation of the energy in me that needed a way to get out, to dissipate. A pressure valve with very visible results. I felt ashamed. I scared the shit out of myself.
I had an infant. A beautiful child. I knew that I would never hurt him. I needed to stop hurting myself. Thankfully, parenting classes were teaching me about emotions, how to name them, how to talk about them. Becoming a parent started to give me the tools that I needed.
Then my marriage fell apart, suddenly. I was blindsided. Given the conditioning that I received, it was finally ok to seek help from a therapist and medication.
I started talking about Dave, my family. I was diagnosed with PTSD and so many things in my life made sense.
I realized that I had been groomed–brain washed–to be silent. To not express emotion–that I turned off emotions to survive. I learned how to disassociate, to numb my body because what it was telling me was too big, too confusing. I was not allowed to say “no.”
For the last seven years, I’ve been undoing the grooming, reprogramming my brain.
I learned to cry. To WAIL.
I learned not to be silent.
I learned to ask for what I want.
I learned how to say “no.” (I still have trouble.)
I learned how to be in my body. (I still want to numb it and often do–with video games and the internet.)
I learned how to trust my body–I’m still learning.
I took singing lessons–to reclaim my voice. But learning to speak, much less sing, after having been brainwashed to be silent is terrifying. Luckily, my voice teacher also has PTSD and I learned to trust her, I learned to sing. I started making playlists of musics about specific emotions or ideas that I was exploring. Spotify allows me to share those lists.
I wanted to sing in front of people but I was frozen, I couldn’t. I decided to try signing instead because it felt powerful to use my BODY to SPEAK. It felt more comfortable–in a large crowd–to sign than to sing. The great thing, was that I ended up singing also.
How therapeutic would it be for trauma survivors to learn sign language? To have our bodies tell the stories our voices can’t find the words for?
This week’s playlist is called solidarity. You can listen to it on spotify. <3
This last year, I’ve been happy that engineering teams are asking me to talk about accessibility earlier and earlier in their development process. A few months ago, one team asked me to look at a prototype that was a bunch of images with a few hot spots. I’m used to getting code and running my typical test pass. But, in this case, I couldn’t.
At first, I thought about what it would take to make the prototype accessible, about the HTML that they would need to write. But, this was an MVP (minimum viable product) to get quick feedback on their design. It didn’t seem worth the investment and it didn’t feel agile enough. So, how was I going to get feedback about the usability of the non-visual user experience at the same time they were getting feedback about the visual user experience?
I took the prototype to a friend who is blind and I pretended to be a screen reader. Instead of him interacting with the computer, he told me what keys he would press and I responded as I understood a screen reader would respond.
“To start,” he said, “I would press the down arrow 4 times.”
I responded by reading the first 4 lines of text on the page.
He said, “Hmm. This page doesn’t have any headings or landmarks?”
I broke character for a second, “Yes, it does. It has 10 headings and 4 landmarks.”
“Oh, well the screen reader would have told me that when the page loads and then I would have used that information to get a sense of the layout of this page.” He said.
“Ahhh-ha! Right. Yes, I forgot that part. Let’s start again.” And I returned to my role as screen reader.
For the next 30 minutes we “played” with the site. I learned where I had holes in my understanding of some of the strategies that people use when navigating a new site with a screen reader. I evolved my knowledge about how a screen reader announces certain aspects of a web page.
I went into the session with a list of recommendations I was planning to make to the engineering team. I left with a new list of recommendations and set of strategies to use the next time I play the role of a Screen Reader.
Many thanks to Kelly Ford for collaborating with me on this experiment.
[Note: This is based on the idea of a Wizard of Oz experiment, common UX research mechanism.]
I had so much fun delivering a keynote at OSCON a few days ago, “Introvert? Extrovert? Klingon? We’ve got you covered.” I enjoyed the hallway conversations afterward, the Facebook comments, the email and the tweets. It’s wonderful to know that I’ve said something that someone else identifies with, that in some way may shift their perspective. It’s been my job for 20 years to help evolve our understanding of the variety of ways that people interact with each other, technology and the world. For the first time, I publicly talked about my experience of the world. It felt really good.
In the keynote I talked about coming out as an introvert. I did not talk about coming out as a woman with PTSD, which intensifies my introversion with hyper vigilance, anxiety and depression. It’s Saturday and I’m 90% recharged after Tuesday’s presentation.
Here’s what my week looked like: I traveled by train on Monday morning, was at the conference for 3 hours on Monday and 5 hours on Tuesday, then returned on the train on Tuesday. Wednesday and Thursday I didn’t leave the house and in fact, spent most of the 2 days in bed, exhausted. The rest of the time I was in my office (catching up on email and attending meetings by phone) or the media room (rewatching Season 3 of RuPaul’s Drag Race). I had stocked my house with food before I left, anticipating the need for “hermit recovery mode.” I had planned on Wednesday to hermit. I didn’t expect to still be so exhausted and continue to hermit on Thursday. I used the variety of self-care methods I’ve evolved over the years and by Friday morning, I woke up giddy with a surge of energy and made it into the office.
I’ve had several people respond that they didn’t realize I was an introvert, or they feel I am very confident or “smooth” for an introvert. In the Myers Briggs scheme of things, I am an INFJ which means:
INFJs are conscientious and value-driven. They seek meaning in relationships, ideas, and events, with an eye toward better understanding of themselves and others. Using their intuitive skills, they develop a clear and confident vision, which they then set out to execute, aiming to better the lives of others. Like their INTJcounterparts, INFJs regard problems as opportunities to design and implement creative solutions.
INFJs can adapt easily in social situations due to their complex understanding of an individual’s motivations; however, they are true introverts. INFJs are private individuals who prefer to exercise their influence behind the scenes. Though they are very independent, INFJs are intensely interested in the well-being of others. INFJs prefer one-on-one relationships to large groups. Sensitive and complex, they are adept at understanding complicated issues and driven to resolve differences in a cooperative and creative manner.
Thus, it makes sense that I’ve spent my career learning about how other people are in the world and I’ve spent a lot of time reflecting how I am in the world. I am often (not always) very comfortable with people. I love and am intrigued by people, especially the variety of ways that people exist in the world.
I need time to myself to reflect, to dream, to synthesize the information I pick up when I interact with the world and the people in it. I need time to step backstage, away from the lights, sit on the floor with my headphones and meditate. Because when I do that, I can step on stage and speak from my heart.
Empathy is “the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.” Yet many designers and developers who I have worked with do not have enough information to have empathy for the various ways that living with a disability influences feelings, thoughts and attitudes. Or it’s more accurate to say that the information they do have clouds their ability to experience empathy for someone living with a disability. There is too much stigma and too many fears.
Aimee Mullins’ 2009 TEDMed Talk digs into the definition of the word disability in a beautiful (and painful) summary of issues that have been prevalent themes since the beginning of the Disability Rights Movement. She reads a definition from a dictionary then says, “I was born into a world that perceived someone like me to have NOTHING positive whatsoever going for them.”
Even when we use the Trace Usability Screening Kit with designers and developers, the experience that I’ve seen people consistently grok are the various low vision and color perception goggles. My sense is that there is a shared experience with color blindness tests that most U.S. kids receive in elementary school. People can also grok captions because there is enough use of them in noisy bars and pubs that people have some unconscious awareness of them.
But living with blindness, physical disabilities, hearing disabilities, cognitive disabilities and speech disabilities are beyond most people’s common experience. I have often been part of someone’s first conversations about making a web site or an app accessible. I have lost track of the number of times I have heard a person ask, “but…how does someone who is blind use a computer?” or “Why would someone who is blind want to use this application?” Watching someone like Steve Gleason interact with a computer via eye tracking software blows their minds. The feeling that I pick up is bewilderment and pity, not empathy.
Another common theme in DRM is that people with disabilities are either viewed as superheroes or children, not everyday, empowered people. We need more exposure of Murderball, Push Girls, and Tommy Edison–to name just a few examples of people being open and “out” about being people–who want to work, learn, play, date, compete.
That’s the lack of awareness bit. If someone becomes more aware and begins to move towards empathy, the next barrier is fear. People who have not interacted with a person with a disability are often afraid of saying the wrong thing, of being offensive. I love the Lean Startup/Lean UX movement because it gets people out of the building and into the field. Yet, how many people with disabilities are they meeting in the field? Not many. Some folks don’t know where to go, others are afraid of saying the wrong thing.
So, UX folks, just as you are encouraged to fail in prototyping, I encourage you to fail in interacting with people with disabilities because you will learn a bunch. You will learn what not to say and what people care about. You’ll learn about where the obstacles are–both the designed, physical barriers and the constructed emotional ones that exist within yourself. Start with this article, “Interacting with People with Disabilities: The Basics” and this list of accommodations for faculty, to learn about any accommodations you might need to have in place to invite someone with a disability into a lab.
If you don’t know where to go, look to the variety of organizations that support people with disabilities in your area. In Seattle alone, here’s a sample of some of the organizations you could contact. One of the best ways I’ve found is to write an email of what you are building and that you are looking for people to test your product. Provide contact information and let the organization send it to their subscriber list. Or ask if there is an upcoming event where you could set up a booth.
- Seattle Commission for People with Disabilities
- DO-IT at University of Washington
- Seattle Lighthouse for the Blind
- Washington Council of the Blind
- Washington Talking Book and Braille Library
- Hearing, Speech and Deafness Center
- Accessibility Camp Seattle, part of the Accessibility Camp movement
- Disability Rights Washington
- Each school district, college or university has (or should have) a disability services office, such as Seattle Central’s
- Aging and Disability Services for King County
- Northwest Universal Design Council
- Hammer and Hand, Universal Design and Aging in Place, Barrier-free homes in Portland and Seattle
- STAR of Seattle, Special Technology Access Resource, Public Computer Center
- Washington Assistive Technology Act Program
- Skills, Inc
- Alliance of People with disAbilities
So, UX folks, get out there and fail, because “if you aren’t failing, you aren’t trying hard enough.”
For the last week, I’ve been assimilating the ideas that I gleaned from the mind melds at CSUN. I asked as many people as I could, “How do you do your work?”
I am often in a state of panic with my work, that I’m not working fast enough. Intellectually, I know that to move from point A to point B, I need to walk all of the steps in between. Yet, emotionally, I keep trying to figure out how to fly or jump or transport myself to point B. As someone said last week, this is an “all or nothing” approach that more often than not results in “nothing.”
Many people echoed the same idea in different ways: “small ball,” “baby steps,” “take the long view.” Yet having this patience, walking the steps–not running–feels like giving in to the forces preventing change. However, it is a brilliant strategy that has captioned Hollywood movies, installed captioning systems in movie theaters, and deployed accessible ATMs.
There are many Point Bs ahead and one–employment for people with disabilities–feels dauntingly far off: 79% of people with disabilities in the United States who were older that 16 in 2009 were “not in the labor force.” (AFB, January 2014)
I’m going to keep reminding myself that the only way to get there is to keep walking and rolling, one brick at a time, until we get to Oz.
Thank you Larry, Lainey, Gail, Dylan, Shawn, Glenda, Elle, Denis, Todd, Billy, Sina, Sarah, Katie, Jim, Karl, Doug and others.
I’ve been attending CSUN this week, the International Technology and Persons with Disabilities Conference. It’s the 17th or so time that I’ve attended the conference. It’s Friday and I’ve been here since Tuesday. I may finally understand how to do a conference in a way that works for me–as an introvert and as a woman with PTSD.
I have routines and I have mastered the art of recharging in my hotel room (almost) guilt-free. People have asked if I’m hiding. I say, “yes.” I am “hiding” not because I am afraid of anything or anyone, I am recharging. I have worked hard–through meditation–to listen to the signals my body gives me that I’m tired or triggered or anxious. I now realize how quickly my reserves are drained. This conference is particularly draining because every 50 feet there is someone else I can’t wait to hug and catch up with. This is my family. I am home.
Previous years, I would have pushed myself to go to sessions, I would have berated myself for not having the stamina of my colleagues, I would imagine people being angry with me for missing their sessions. I would spend the following week in bed, completely spent. As a busy professional and a single mom, I can’t afford to do that anymore. I need to pace myself this week so that when I return home, I will be present for my son, for my job, for myself.
So, this year I’m doing things differently. If I am feeling tired, I return to my hotel room and lie down. I do feel sad that I am missing some of the great sessions and discussions, yet twitter helps me have a sense of what is happening and who I can check in with later. I have learned the art of one-on-one discussions. If I were a Vulcan, a conference would be a series of mind melds.
This conference has been a smorgasbord of possibilities for conversations and breaks–like I’m running my own unconference in the midst of this larger conference. Lots of breaks…to recharge, to integrate new knowledge, to think, to write, to meditate…and then it’s back to mind melds and hugs.
This week I’m meditating on the phrase, “I am.” Each time I feel a tinge of insecurity or guilt, “I am” with a big breath.
I am, Wendy. I have PTSD. I am enjoying myself at my pace in an ocean of amazing people. I am here, being myself, healthy, lucky.
Please forgive me if I’ve missed your session or a great discussion. Find some time with me in a quiet corner so we can mind meld. I’m here. I’m listening. I’m participating. I’m just going at a slower, less crowded, quieter pace.
In a world of 30-second super bowl ads and 140-character tweets, how do you catch someone’s attention? When you get it, how do you communicate about something as complex as web accessibility? In this session we’ll talk about the issues we face helping large corporations make their web properties accessible. We’ll talk about tactics that have worked well and strategies that haven’t. This will be an insider’s perspective into corporate culture from two newbies to that culture.
This will not be a discussion of the color black (since we wouldn’t want to convey information in color alone!). This is about messaging web accessibility within a large organization, catching someone’s attention and maintaining it in order to create organizational change.
The title of the session refers to a phrase in the fashion world, “x is the new black,” which Wikipedia describes as “an expression used to indicate the sudden popularity or versatility of an idea at the expense of the popularity of a second idea.” We used this phrase because we wanted to talk about how we can make accessibility more accessible, just as companies like Ikea have made design more affordable. Accessibility clearly changes the world: smart phones exist because of universal design, yet most people don’t realize smart phones are built on assistive technologies like onscreen keyboards and screen magnification. Our job is to help our organizations embrace innovation and accessibility; to embrace not just a “fad” but a better way to design and build that we believe is timeless…kind of like the color black. We’ll talk about how we’re trying to do it.
On 12 April 2010 I had the pleasure of presenting the afternoon keynote at MinneWebCon. I was impressed with the community–so vibrant and aware of standards! It was a fun day full of wonderful presentations and conversations. It’s a very special conference, well-organized with high caliber presentations. I highly recommend attending next year!
Here are the artifacts:
- The tagged PDF version of the slides,
- The powerpoint version of the slides on slideshare,
- The captioned video of the presentation.
Enjoy! I’ve provided the slides in several formats hoping that everyone will be able to use at least one of these. If you run into any issues please let me know.
FYI: the Slides via Easy Slideshare only pull the text from the slides and not all of the alt-text associated with each image.
(I performed this 24 March 2010 at the CSUN tweetup. Captioned video should be available in the future.)
An Ode to Twitter
A non-structured, non-lyrical ode to twitter…
1,000s of people (or more?) talking about #accessibility.
# a 1 1 y
Do you say, “ally?”
We’re talking about access.
We’re building inclusion.
To express our views.
To change the world.
To connect with others who are
To connect with others who are
To connect with us who are
To be here tonight who are
To hear, see, feel…
PERCEIVE a world where we are all
What of those who are not on twitter?
Don’t have internet access?
Don’t have access to a computer?
Some are given a voice on twitter, e.g. @invisiblepeople
…but many are not.
So many voices…
How do we harness the power of these 1,000s (more?) of voices into one large trumpet call for change?
Where’s our Ashton Kutcher with millions of followers?
What’s the loudest way for us to challenge assumptions?
The most effective?
Should we stage twitter protests?
How do we become cohesive?
Can we reclaim or repurpose “disability” into an empowering word?
Can we think of twitter like a parade of thoughts that we inject with inclusion?
I want to recruit you.
What if we were “out” about our abilities?
Would it convince designers that people are more able, more varied than they assume?
Would they realize that they have more connections to a variety of abilities?
Our tribe created the innovations that iPhones and Androids rely on:
What our tribe does today will make tomorrow’s tools more flexible.
Make tomorrow’s tools…possible?
Are we moving towards inclusion, one tweet at a time??
Will tweeting make more restaurants accessible to people who use wheelchairs?
Will tweeting encourage more people to add alt-text to images?
Will tweeting cause future technologies to include accessibility features in the alpha release?
Does tweeting raise awareness of accessibility issues with non-aware twitterers?
If not, why not?
This is my ode to twitter.
My ode to the tribe.
My ode to our connections and our innovations.