Sunday, December 31, 2006

New to SharingOurDays -- A Life Less Convenient (Lupus)

New SharingOurDays reader Sue Cline has suggested a blog that is one of the most impressive I've seen. Incredible images and writing. Jen Burke is the writer and she has lupus; I am incredibly impressed with the work she produces basically every day.

Here is an excerpt from December 25, 2006:

Drag is not an option
By Jen at 12:44 am on Monday, December 25, 2006

As soon as you put on a mask or go in drag, your world is a tad distorted. Your world shifts as others’ perceptions of you change.

Business drag: put on your suit, get your game face, and go.

The fact of my disclosures here changes what kind of mask I can wear for future employers and clients. That said, for employers and schools since ‘98, I have had to disclose my illnesses to receive accommodations under the American with Disabilities Act. If folks don’t know that I’m ill and have proof of my claims, there is no way they can be expected to make any reasonable accommodations.

In disclosing, I give up privacy. Privacy in exchange for equalizing the playing field by giving me a route around my limits. My disabilities are invisible, unless you’re seeing me at a doctor’s office maybe, or see me limping on a bad day, or something else along those lines. For the most part, people have told me they would have no idea that I was sick based on appearances for the most part (some days, I look green and not nearly as cute as Kermit); appearance-wise, folks have told me that I look like the healthiest one in the room (which was kinda scary occasionally, considering how thin I was at various times over the years when people made this remark).
“But you don’t look sick.”

No, I don’t, and I make every effort to look as good as I can, which is why I’m hyper about maintaining weight and staying fit. And that extra helping of blush didn’t hurt me none, yet looking healthy in some ways gives me a different problem: I have to convince people of sickness and its impact on my life without making myself sound like I will be terminally incompetent.

By default through disclosure, I give up the disguise of the professional, of wearing business drag, because I have told employers, schools, and most recently the bar about the facts of my life, about the facts of inconvenience, altered schedules, and altered states.

Early in the disease, I was learning through trial by schedule. I didn’t know what I could and couldn’t do. The only thing to do was to try something and then see if I crashed and by how much. Now, there is no point in being anything but honest in my limits, since the truth of illness comes out anyway, especially since I’m at a hospital at least once a week and normally more.
The encouraging part of the post for those who are in the same boat and wondering: clients have never questioned me. I negotiated fair deadlines that took into consideration some days of possibly being flat on my ass - just in case because I can’t take my body’s ready performance for granted.

As for employers: when I was resuming and interviewing heavily in ‘04, firms were receptive to what I listed as my needs and the fact of illness once I disclosed in the interview. I was hired despite my limits because of what I presented in my resume. The biggest health-related disruption in my life then that altered my work with a firm had nothing to do with my health; it was my mom’s cancer diagnosis. The responses that I received in ‘04 were the biggest boost to my confidence - the responses to my work weren’t being altered because of my illness and that employers still looked at what I produced over the years in law school and at work.

The downside I’ll describe in terms of what I’ve learned: I’ve learned that many people simply don’t know *how* to work with someone who has a disability or is chronically ill, which means I have to provide the know-how and roadmap for how to make it work, how to set deadlines, how to set up communication and quality checks and so forth. I’ve also learned that if an employer still has the mindset that you *must* show up 8-16 hours a day in one physical location everyday, we simply aren’t going to work out, but that is the truth that everyone knows: not every person is a good fit with every employer.



Blogger Jen said...

Wow, Sean, thank you very much for sharing this. I appreciate it. :)

12:23 PM  
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11:13 PM  

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