Archive for the ‘musings’ Category
In preparation for Burning Man 2013, I printed 100 copies of a book of poetry and short stories that I had written during the previous 10 years. In the last few weeks, I’ve been drafting blog posts to start sharing those poems as well as new ones. I had hoped to finish a poem about tenacity before the GAAD event on Thursday, but depression was the theme of the week and I wasn’t feeling tenacious.
This week’s playlist is called “Tenacity.” It starts with Tenacious D and meanders through geeky, funny songs because when I need to feel more tenacious, I turn to comedy.
I cried at work on Wednesday because I was feeling afraid and deflated. I cried at home on Thursday because Chris Cornell died. I cried at the Space Needle on Friday after visiting the KEXP memorial, listening to Soundgarden, standing in the sun, feeling the warmth and relief of this rainy winter letting go. I cried this morning in bed listening to Chris sing Whitney Houston’s, “I will always love you” and reading that he committed suicide using an exercise band and a carabiner.
And I remembered this poem that I wrote 27 December 2012.
Towards the lightDepression muffles cocoons pads encapsulates Hazy unclear murky Heavy silent still Depths darkness mutes The sun shines the weight pulls me down unable to stretch unable to grow towards the light Depression is hibernation growing roots in winter Storing up for the burst of growth in Spring Preparing the systems solidifying grounding composting Readying me for the eyes the sun the warmth For joy will be grounded in the earth as it reaches for the sun.
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
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 have recently become glued to my computer monitor as the latest reality show “HTML 5” unfolds. Since I was a participant in previous W3C reality shows (both seasons of WCAG), I understand some of the history and sympathize with many of the participants/actors. Here’s my take on where things are and where I hope they are going.
HTML 5 is the first time where people with disabilities are at the language development table at the same time as everyone else and I think the reason things have gone a little wonky is that we aren’t used to being at the table at all or we show up to the table a decade after everyone has left (Windows and AJAX are both good examples). There are two very different cultures learning how to work together. It’s exciting and frustrating to watch.
For example, Ian suggesting that aria could be incorporated after Last Call stirs up a lot of history and emotion. We’ve seen it happen far too many times where accessibility is thrown out for the sake of progress and it’s nearly impossible to catch up if we miss that initial window. (While some people seem to be assuming a Second Last Call is a given, there is no guarantee.)
In terms of the canvas element, we’ve already missed the window. canvas is implemented in Firefox, Opera, and Safari and several applications exist that are not accessible such as bespin. I’m heartened by the quick pace of the work to remedy the situation, but it’s hard to tell how it will play out.
Here are the things I’ll be watching and hoping for with the spec in general:
- As of last Friday’s Canvas Accessibility Task Force meeting, folks at Apple (Doug and James) are working on a prototype that creates a limited object model with aria attributes. I’ll be interested to see what information will be available to access technologies, how that information is provided, and how someone will interact with it.
- I like the direction that the HTML WG and the PF WG are taking in integrating ARIA into HTML5. I’ll be watching for the HTML WG response to Steven’s proposal.
- The discussion about text alternatives is puzzling. I’ll definitely keep tabs on that, although I have a lot to catch up on to understand the issues.
- Dare I even touch the summary attribute? [grin] It seems that it was used as a sacrificial lamb to make a process point. While it was intense, the energy and space that were created as a result look promising and I hope are sustainable.
Overall, I think things are heading in a good direction. Having been an editor on two specifications that were fairly contentious, I know it is hard work to find the “right” words that a disparate set of people will be willing to build consensus around. And, consensus is really, really hard. It isn’t unanimous; it’s “what can we all live with.” And since we all have to live with compromise, it isn’t perfect in anyone’s eyes–that’s the most disappointing aspect of specification writing. But, that same compromise is also the beauty because it shows commitment and connection for the future.
So, I’ll keep watching the “HTML5 Reality Show” and hope that accessibility doesn’t get voted off of the island. On the surface the discussion is about elements, attributes and apis, but at its heart it is about everyone’s ability to participate in the future society that will be based on these technologies.
A big shout out to all of you in the HTML 5 trenches. This is really hard work and keep at it. I’m watching, cheering, and jeering from safely behind my monitor. [grin]
All of us share this world for but a brief moment in time. The question is whether we spend that time focused on what pushes us apart, or whether we commit ourselves to an effort — a sustained effort — to find common ground, to focus on the future we seek for our children, and to respect the dignity of all human beings.
–President Barack Obama
I saw this exchange between Christian Heilmann and Jared Smith on twitter today:
jared_w_smith “There are no bigger problems in Accessibility than following every paragraph of the guidelines.” says @codepo8. Amen brother!
codepo8 @jared_w_smith seriously, every forum and mailing list is running in circles. Accessibility is stuck in 1998, web development in 2012.
I follow most of the accessibility forums and have since 1995. In 1998, people were asking if the “alt” attribute had anything to do with the “alt key” on the keyboard. Today’s questions are about menus, gmail, ARIA, forms…When DHTML was first surfacing as a technique we were panicking because NO ONE was talking about it. Look where we are now: ARIA built into several toolkits and the major browsers and access technologies understand it.
Yes, the accessibility forums are not as far ahead as the developer forums and that sucks. But, there is a larger disconnect between accessibility and technology that shapes this gap. Accessibility and disability awareness is not part of everyone’s everyday experience. The cultural dialogue about basic human rights is ongoing…we’re still debating if accessibility is even a human right! Until it is assumed that every web site, every web application, every web service must be accessible, this gap will exist.
So, yes, the guidelines are pretty dense, but so is every other technical specification and that hasn’t stopped them from being adopted and used. There are bigger issues at play here.
A post from David Baron questions if web accessibility is a human rights issue. Here’s a quick summary of some of his major points: He acknowledges that laws exist that give people with disabilities basic human rights and that on-line government services should be made accessible. He disagrees that Flickr should require all photos to have alt-text and he believes that requiring all web services and applications be accessible would stymie innovation. He calls people such as John Foliot and Matt May extremists and worries that “this community is in significant danger of being taken over by, or at least best known by, those within it who espouse such extreme positions that they risk causing the entire community to be ignored.”
David says, “It’s far better for accessibility to be the automatic result of writing HTML in the normal way rather than something that has to be done as an extra development step” Yes! That’s part of the goal of the W3C Authoring Tool Accessibility Guidelines (ATAG). If the tools just produced accessible content, then voila. The web would be more accessible.
David wants us to explain why access to the web is a human rights issue.
Human rights refer to the “basic rights and freedoms to which all humans are entitled.” Examples of rights and freedoms which have come to be commonly thought of as human rights include civil and political rights, such as the right to life and liberty, freedom of expression, and equality before the law; and social, cultural and economic rights, including the right to participate in culture, the right to food, the right to work, and the right to education.
Wikipedia, http://en.wikipedia.org/wiki/Human_rights. Fetched 12 March 2009
Web services and applications are becoming the way that people participate in culture, buy food, work, and learn. Therefore, ensuring that they are accessible to all people is a human right. This is supported in the United Nations Convention of the Rights of Persons with Disabilities that has been signed by 139 countries. Article 9 – Accessibility and Article 21 – Freedom of expression and opinion, and access to information specifically mention services provided via the internet.
It’s important for us to recognize each other’s concerns. On the one hand we have technologists who want to create things to help make the world better–help people communicate more richly and quickly, to create technologies for self-expression and commerce. Rock on. We want you to innovate because you’re changing the world. On the other hand we have people who want to use the technologies and to participate in society. When the technologists say, “Don’t make me think about accessibility, I want to be innovative.” The response from people with disabilities can be hostile because the message from the technologists is, “I do not value you enough to include you in my innovation.”
The funny thing about David’s post is that he mentions the invention of the telephone. Thomas Edison was hard of hearing and part of the reason he spent so much time experimenting was that he wanted a device to help him hear. For Edison’s invention to be complete, it took the help of another person involved in the Deaf community, Alexander Graham Bell, who in his experiments to understand speech, invented the microphone. In both instances, inspired by friends and family who had hearing loss, they changed the world.
The irony is that these technologies changed the way we communicate so much, that people who are deaf were unable to participate and it was later that the modem (for the TDD) and other devices were developed. But, those tools were in response to the earlier inventions and have further changed the way we communicate.
Therefore, the exact worry that David has–lack of innovation–is exactly what we’ll avoid if people with disabilities *are* considered in the design and experimentation of new ideas! So, see, we really *all* can get along and no one gets hurt. Come on folks, let’s go play and have some fun.
It’s interesting that comments on my previous stew focused on types of toilets (although, I am happy to have learned about the toto 2000). I’m not sure if that means the idea of monetary incentives for accessible web design should be flushed…
This morning as I prepared for my commute to work (the walk to the basement of our house), I was thinking about the comments on Scoble’s Will videoblogs be outlawed because of California’s accessibility laws? One of the concerns is limits on personal expression.
Having recently wrestled with making a slideset accessible, I can understand the pain and frustration. I don’t have the hours to spend futzing with broken software. I need to get those slides accessible, publish them, and move on. As a working mother, I only have 24 hours per week to do my work – and that goes by far too quickly.
With the civil rights movement, the government literally held doors open to ensure integration in schools and on buses. For accessibility, it almost seems as if we are holding the doors open but forgetting to fix the ramps and railings that lead to them. Those renovations hold a cost that the civil rights movement did not have to contend with. Civil rights is overcoming attitudes; human rights/disability rights not only has to change attitudes but must lower physical barriers as well. That cost – in time or money – is a barrier. How do we remove that barrier? Is it up to the government? The community?
Getting back to personal expression, our laws say nothing about making private homes accessible. In a similar vein, personal web sites are not covered by law. Again, looking at civil rights, if you don’t want to let a white person into your home, you don’t have to but if you own a business, you must open your doors.
On the web, the line between personal site and public service blurs. I would argue that Scoble’s site is not a personal site, he offers a public service – the information he disseminates is astounding (not only in quality but in quantity! :). But, who should pay for the captions of his videos? One of the values of what he is doing is the real-time interaction – streaming video from his phone.
When making information accessible, you can run into a lot of broken tools along the way – as I did yesterday (and let me pause here to apologize for using my blog as a venting receptacle. My purpose is to help make the world more accessible – bitching and moaning is not a constructive way to enter the dialog…I task myself with sending constructive feedback to folks working on OpenOffice and Acrobat and making sure the problems did not stem from my own ignorance). Unfortunately, the reality is that many tools are broken (or not as easy to use as they could be) and making information accessible is not always cheap and easy.
How do we make it cheap and easy? And this need for “cheap and easy” goes both ways. Not only do the barriers to information need to be lowered for people with disabilities – the typical screen reading or magnification software costs more than a desktop computer – the barriers to creating accessible information need to be lowered. So, who should assume the costs?