If there’s one thing I absolutely have no tolerance for, it’s being lied to. To add insult to injury, I hate being lied to and discriminated against all in the same breath. If it looks like a duck, walks like a duck, and quacks like a duck, it might very well smell like bullshit.
Since long before I moved here, the local library has offered delivery service to anyone who is home-bound. I can safely say that being as sick as I am, unable to get out of bed nine days out of ten, that definitely qualifies as too sick to be there on any type of constant basis. For over a month now, that was fine. No questions, no drama, just deliveries and pickups every 2-3 weeks.
On Friday, the 1st, after nearly a month of battling migraines and Fibromyalgia pain, I felt good enough to drop off my stack of books, CD’s, and DVD’s, and pick up the items on hold. I called in advance to let the administrator know, so she’d be able to move my items off of her desk. She’s the one who delivers and picks up, so I felt it was only respectful to let her know she need not come out prior to a holiday weekend. She has never been anything but lovely to me.
During this seemingly simple process, a woman checking out my items took note of my account status and questioned me. She didn’t ask what was wrong, but she was loud enough that I informed her that my health is a personal matter. She then sends me upstairs to correct a secondary issue, but the new person decided to outright challenge me. Not only did she question me, but I refused to answer her because she was outright rude and violating my privacy by announcing my business to a busy library. I was always taught that you keep your voice down in a library, but she was so loud that people looked up from their laptops. My personal information does not need to be read off of a screen at decibels that can be heard in space. She stared at me and I stared her down. I waited until she looked away and did her job (A DVD set I returned was badly damaged and I could not view the final three episodes on disc six. I was asking that a copy be ordered from a different library and I suggested the returned copy be replaced. You would have thought I had just asked her if she’d married a Martian. The woman was as dumb as a box of rocks with a pile of shit on top, but I tried to patiently walk her through the process by speaking slowly.), but I knew I hadn’t heard the last of things simply by showing up looking like I’m healthy. I knew one or both of them would say something to someone and cause trouble. I had, of course, hoped they’d have compassion and realize that people like me are the reasons they have jobs, but alas, one of them did or said something. They will now be forced to pay for their callous invasion into my privacy. They’re librarians; not medical professionals.
Here’s the thing with invisible illnesses: On a good day, I look damn good. It does not, by any means, make me a liar, or mean that I am somehow “abusing the system”, which is precisely what I was accused of. It means I took 40 minutes or so to even out my skin tone, fill in my eyebrows, and make myself look like a human-being. It’s not a prerequisite for everyone, but it is for me. When you spend your days in agony, it’s good to remind yourself that you’re young, attractive, and clean up really well. I do this for ME, not for anyone else. Unless I pointed it out, most people would not be able to tell you that I had makeup on, unless they were looking at my eyes. For me, it’s similar to getting a haircut, in terms of analogies. We all look and feel better when our hair looks nice, or maybe that’s just 99% of the women I know and most of the men. My brother began going grey young and when he started to realize that I wasn’t joking about his hairline receding, he started shaving his head every 6-8 weeks, if not more often than that. He feels good when he knows he’s not sporting a mop of hair. It makes him look about 10 years younger than he is, so it’s a win-win. Wearing makeup, for me, is a form of art. I’m not masking anything, I’m just showing a little creativity. I didn’t go in wearing false lashes or a full glam look, it was pretty basic, but I was judged for it. You could hear them thinking “What’s wrong with her? She looks perfectly healthy to me.” Yet, I was limping, something that seemed to go unnoticed by these old bats.
On the 6th, I received a phone call from the director of the library. He listed all of the accusations against me and informed me I would receive one more delivery and one more pick up, and that the program was being “temporarily discontinued” and he gave me a list of excuses that simply did not make sense. Each story was different from the last. I asked if it was going to affect everyone in the program or just me. Three times he said “No, JUST YOU.” I made him repeat it so he could hear what he was saying, because it’s blatant discrimination. I wanted him to hear himself. He claimed that the Board of Public Libraries in Boston would be contacted for “guidelines” and spewed some other nonsense. He blew off a lot of questions I asked and was very rude and dismissive, all while trying to seem charming and sincere. You could smell the bullshit from three centimeters away.
First he claimed that I had “too many holds” and they were getting into trouble with the other libraries over it. At the time, I had over 20 holds. I now have 7. Then he claimed that the program was “half-baked” and that guidelines had never been implemented as to how many items a person could have at one time, etc. The stories became more and more ridiculous. Ultimately, he made me sound like the scourge of all readers. I ended up returning a stack of books and DVD’s I never had the time to read or watch, but because he was such an asshole I made sure I got ahead of him. One thing you do NOT do is mess with THIS writer. I’m well-known for being an incredible public speaker; the second he deigned to call me he started a fight he will not win.
After I got off the phone with him I called the Board of Public Libraries myself. When they returned my call, they were absolutely APPALLED by how I was treated. I spent over 40 minutes on the phone with the person handling this, and she could not have been kinder or more respectful. She told me that the individual library establishes the guidelines for this “wonderful program” and that she understood how much I suffer because she has three family members with Fibromyalgia or other invisible illnesses. Her exact words were “On a good day, you look and feel great and on a bad day, you can’t walk.” YES, she 100% understood. I felt vindicated. She immediately put in a call to their “director” and suggested I follow-up by writing a letter and CCing the Board of Trustees. She said “I think you’re the perfect person to show them that not everyone fits into the mold of what “sick” looks like. You legally have the same rights as if you came into the library in a wheelchair and they have to accommodate you.” She told me she’d been a library director for 15 years prior to moving on to a different job and had NEVER treated someone in such a manner, and that the last thing any director wants is for things to escalate to the Board of Trustees because that means they can lose their funding and be closed down permanently. She agreed that I have every right to read the books I want to read, watch the DVD’s I want to see, and borrow the music I want to hear. She said “The other libraries know this program exists. If it’s such a big deal, the larger ones can order extra copies if it’s in their budget or the other person on the wait list can wait an additional week. It’s not the end of the world.” I felt like I’d just spoken to my spirit animal. 🙂
My nearly two thousand word letter will be going to the “director” and I’ve CC’d both Boards on purpose. This asshole screwed with the wrong chick with one phone call, but make no mistake, he will either work with me or I’ll have his job. I do not mess around when it comes to discrimination in regard to invisible illness. If he did this to me, he will inevitably attempt to do it to someone else, someone who isn’t as smart or as strong as I am, someone who lacks my voice and character. That’s unacceptable to me, so not only am I putting my foot down, I’m ready to discuss this with every local media outlet known to man. I’m sure the Board Of Trustees would have a field day with that, so I gave him the option of working with me to set guidelines into place and I instructed him to teach his staff about respect and discretion as the better part of valor, lest it get them into trouble, especially if I lay eyes on either of those poor saps again. Either they’re stupid, senile, or a combination thereof, and if that’s the case, then neither of them should be allowed to work with the public in such a fashion.
Have you been discriminated against as a sufferer of an invisible illness? If so, let me know about it in the comments.
KNOW YOUR RIGHTS!
copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.