Tag Archives: disability

The Importance of Speaking Up

— UPDATE —

The blog post mentioned below is now also featured in a Seattle Times article about women who code.

— UPDATE —

I hesitated, a few weeks ago, to participate in a radio conversation with with Stuart Reges and a host. Reges is the author of the now notorious post titled ‘Why Women Don’t Code‘.  Since then, I’ve found myself asking what happens if I leave the podium, who’s left to speak out?

I declined, I admit, because I was afraid — afraid that I would say the wrong thing in a situation where I’d have to think on my feet, perhaps overclaim or make a statement that the literature (which is not directly in my field) does not support. I silenced myself rather than take a chance to make a difference because I lacked the self confidence to participate. But finding my voice
means speaking out even when it makes me uncomfortable.

That’s why I spent the last week working on a medium post titled “Why Don’t Women Want to Code? Ask Them!” In it, I argue using a series of anecdotes that one of the ways in which we fail women is by assuming that we know what is influencing their decisions. As my friend Sandy Kaplan said, after providing feedback on my medium post, “Assumptions shroud in mystery that which must be exposed to light to heal.”

This post was not easy to write — it required hours of work, and was improved by the generous feedback of many people. I note this because the labor of telling this story needs to be acknowledged. Many thanks go to my sister in law, spouse, friends, and fellow faculty.

Capacity Building for Accessibility @ CMU

AccessComputing Capacity Building Award goes to Jeff Bigham and Carol FriezeI just finished an inspiring day attending a capacity building for accessibility workshop at CMU organized by Carol Frieze and sponsored in part by Access Computing (who’s founder, Richard Ladner, who was the keynote speaker). At the event, Carol and Jeff Bigham were honored with the Access Computing Capacity Building Award, a well deserved honor.

 

It was wonderful to see the number of people in the room, and to realize just how strong and rich the accessibility community at CMU has become over the years since I arrived. Just to list a few of the faculty and post docs in the school of computer science who do accessibility research and were represented at the summit in some way, we have Henny AdmoniChieko AsakawaJeff Bigham, Carol Frieze, Scott Hudson,  Jennifer Mankoff, Luz RelloAaron Steinfeld and Sidd Srinivasa. Many others work in the area, such as folks associated with the Quality of Life Center that recently ended (its leaders were Dan Siewiorek and Rory Cooper). Of course that brings up the Department of Rehabilitation Science and Technology at the University of Pittsburgh, a rich resource and partner in much of our disability work, which Rory is a member of.

I’ll close by quoting our keynote speaker, whose goal is to see not only increasing attention to accessibility research, but increasing inclusion of people with disabilities in computing:

Computing fields need more people with disabilities because their expertise and perspectives spark innovation

 

 

 

My chronic illness and academia

A friend happened to send an interesting article  about chronic illness and academia my way today, and it made me realize that a post on the topic is long past due.

For those of you don’t know, I have Lyme disease. I was diagnosed in October 2007 (pre-tenure), but had been ill for at least a year before that. I blog about my Lyme disease at http://gotlyme.wordpress.com (inventive title, I know :)). A special section of the blog focuses on work and illness. Lyme disease was debilitating for me, and I was on disability (part time) during part of my treatment. I am now much better, but still have relapses about once a year and bad days more often. Prior to my experiences with Lyme disease, I had a very difficult repetitive strain injury that also caused severe impairment (typing at most 30 minutes a day at first, 2 hours a few years later). This occurred at the start of my PhD and lasted into the beginning of my first faculty position.

I don’t want to go into details about those illnesses here, rather I’d like to speak about the relationship between having an invisible chronic illness and being an academic. I have had more than one person approach me asking for advice and guidance as they deal with their own illness, usually by word of mouth. Illnesses like mine (and many other chronic illnesses) are mostly invisible, and it can be difficult to find information about how to cope with them. When other academics disclose their own struggles and process (such as Elyn Saks’ article about working with schizophrenia, or Gerry Gold’s article on the social context of long term disability as an option for those who are considering leaving work because of their illness) it can be eye opening and inspiring for those of us trying to find our own way forward. Equally important is access to facts, such as the AAUP’s report on how faculty members with disabilities should be accommodated.

For me personally, one of the biggest changes I’ve had to make (and most positive) has related to my  approach to managing my time. Time management has been a theme since early in my graduate school career and I have learned never to take time for granted, how to prioritize, and when to cut back. I discuss some of the things I learned on my Lyme blog:  managing an unpredictable illness, and trying to manage a full time job on a half time schedule.

Another big challenge has been disclosure. It took a great deal of time for me to value the label “disabled” as a valid description of myself, and I have always been sensitive about it not only personally, but also with respect to my work. I never filed anything official with the university during my graduate school experience. I did not speak of my impairment during my job search until I reached the negotiation stage. I did however confront our dean at the time when I thought he wasn’t doing enough to prevent others from suffering the same preventable injury I had.  At CMU, I spoke with my department chair as soon as I had a diagnosis. However, I waited to file anything official until I desperately needed a parking permit, and one close to my building. Even then I accepted second best up until the day when I almost collapsed trying to get from that spot to my office. Finally fired up, I marched (well hobbled with my cane) straight into the deans office and demanded something better.

Although I have disclosed much of my experience at this point and freely speak of it when it seems pertinent, there is still one area that I rarely discuss: the cognitive impacts of my disability.  At my worst, I would sometimes spend more hours each week in fog and pain than out. Thanks to my very supportive husband, I would grab my computer and do essential thought-work whenever the clouds cleared and he’d take the kids so I could do so. Even so I read one journal paper (submitted before my diagnosis) in horror when the proof came back a year later. I have experienced moments in meetings with students when I could not find the words to express my thoughts; been reminded that I just said the opposite of what I meant, and experienced large black spots in my memory. These moments (though thankfully mostly behind me) were experienced as fearful signs of the possibility that I might not be able to continue as an academic. Most difficult is when they occur in public contexts, such as the difficulties I had at a talk I gave a few years back, and the program committee meeting that led to a blog post on the difficulties of re-integrating into academia after a long pause.

But what has defined the positive side of my experience, more than anything, is the support of those around me. I will never forget hearing that my advisor almost got into a fight defending the truth of my claims that I could not type. Or the day that an angry stranger mumbled about supporting the disabled as he opened a door for me when the push button failed and my hands lacked the strength (this led to my eventual acceptance of the label disabled and a related lifelong interest in assistive technology research). I have had long phone conversations with a colleague in our field who experienced chronic fatigue. I have been given a role as a collaborator when I sorely needed it. Instant Message chats galore have enabled remote and close colleagues to help me work through difficult patches and decide strategy. I have been driven home countless time by a close friend when I ended my day too weak to bike or walk, and been given writing aids (as a graduate student with RSI) and more recently teaching leaves, co-instructors, extra TA support, classes scheduled around my disability, and control over my tenure clock.

If you experience a chronic illness, I encourage you to go after the support you deserve, accept help, and seek advice. Drop me a note any time. Check out the Chronic Illness and Academia forum at the Chronicle of Higher Education. Talk to the people you trust, and get advice about when to say more. Stand up for yourself when you need it, and if people are not supportive, find other friends. Above all, know that it is possible to be both disabled and an academic, if that is the path you choose.