(Note from Zen Angel: I was having difficulty with this post...it kept changing dates on me, and new posts would appear under it rather than on top...so I had to delete the original
& am re-publishing it now. I went ahead and posted Amanda's comment below, so it
would not be lost. Sorry for the mess.)
I belong to an online support group of people with MS. It's been such a gift to me, over the last few years. Each week, we have an "open-ended" chat, where we can discuss anything we like (MS-related or not), and we have a "topic" chat. The topics change every week.
This week, the topic was "Hurtful Things." We were supposed to examine hurtful comments or actions by friends related to our MS diagnosis (we've discussed family in the past, and as we all know...there's a big difference between family and friends). The goal being, to determine WHY it was so hurtful, how that impacted our relationship with the friend(s), and what we learned from it.
It was a difficult topic for me, and I ended up being pretty "silent" during the chat. I am now thinking that this was a bad move on my part, that perhaps maybe I do need to examine those "hurtful things" that were running through my mind during the chat but didn't make it to my keyboard.
And lucky you...I'm sharing them here. Well, it's my blog, and all that.
There are two "hurtful things" that I've been thinking about since the chat. One is kind of non-specific, and one is definately a specific incident. The non-specific one I have already discussed here before...the "fair weather friends" who quickly abandoned me when I got MS. The specific incident, I haven't shared here, or talked about, in some years.
It happened on Halloween, four or five years ago. I had been very sick that year, but was improving. So much so, that I accepted an invitation by a friend, "Julian," to come see the debut performance of his band at a local nightclub. I had not been able to enjoy an evening out in a very long time, and I was greatly looking forward to it. Jonathan stayed home with the kids, and a mutual friend, "Kim," went with me. We both dressed up as sort of dominatrix-sisters. It was fun.
When we arrived at the club, I found out that Julian had forgotten to put our names on "the list," so I had to stand outside in line. Now, normally, that wouldn't be a problem...but my legs had been giving me trouble all year, and I had been counting on that early admittance. There was nowhere for me to sit, and I had to sit on the curb...with my cane and Kim to help me up and down. In front of a lot of people. It may seem silly, but that was embarassing to me. In any event, I wasn't going to let it ruin my evening, and was still looking forward to the show.
A few minutes before the doors opened, another mutual friend, "Donna" arrived...with her seven-year-old son, "Allan." I had two problems with Allan's presence: one, it was almost two in the morning, what on Earth was this child doing out, downtown, so late (at a night club, no less); and two, he was dressed in faux moccassins, buckskins and headdress. The first disgusted me as a parent, and the second offended me as a Native American. But it wasn't my kid, and once again, I chose to overlook it all because I was bound and determined to have a great time.
The doors finally open...and again, I'm in trouble. Stairs, stairs everywhere. No elevators, no ramps (I have no idea how this building gets away with being so completely inaccessible. Maybe it's historic? I don't know). And after standing for so long and struggling with the curb...the stairs looked, to me, like Mount Everest. And felt like it, too, once I was finally up them. I was close to collapse by the time Kim got me to a table. Adding to my problems is the fact that the place is not air-conditioned. My MS is heat-reactive, and no air conditioning equals big symptom flare-up for me. Still, I am trying to make the most of it, and hoped to cool down with a drink...with lots of ice.
Julian sees us, and rushes over to ask why we hadn't come in for the sound check, only then realizing that he had forgotten to put us on "the list." He shrugs it off, no apologies. I am a bit peeved. He buys me a drink, and all is forgiven.
After a few minutes, Julian takes off backstage to get ready for the performance. I am on drink number two, and beginning to enjoy myself. A few casual acquaintances join us at the table. The drinks are good, the conversation excellent. I am having a great time.
Then...the spotlight on the stage turns on, and we all quiet down for the show. An older man, dressed like a monk, is standing alone at the microphone. For a moment, he says nothing. He reaches into his pocket and pulls out some index cards. Then he begins to speak.
To my absolute horror and astonishment, it's a long poem about the "red man's savage god" and "primitive cries to the heavens, ulalala ulalala yahalalala!" I am speechless. My first thought is, "Julian must not have known about this, this guy must be with some other band."
I am wrong.
As soon as the "poem" is over (finished with a pathetic, two-minute-long war-whoop), the curtain rises...on Julian's band. They begin to play, some pretty decent goth-metal type music. And there, in the forefront, pretending a sacred dance of which he has absolutely no knowledge...is Donna's son, Allan. War-whooping and acting for all the world like a tiny, hyperactive Tonto.
I am stunned. I am horrified. I am hurt.
The people at my table, and many at other tables, are staring at me. One of the beforementioned casual acquaintances whispers to me, "Ah, man...I am so sorry about all this. I can't believe they did this. Are you ok?" I hear a man behind me ask someone unseen person if I am going to "do anything about it."
I decide that yes, I am going to do something about it. I got up, and I left. I did not care, at that moment, if Kim came with me or not...but I am glad to say that she did.
We caught a cab home, and the whole time I kept thinking...this was my first night out after a long, long MS attack. And I spent it, listening to a poem insulting my spirituality, my ethnicity, my people. And to top it off, my friends knew all about it. Julian, Donna...they orchestrated this, as part of the show. They actually thought it was a good idea. I was struck by the conclusion that they were either A) racists, set out to humiliate me and mine, or B) ignorant shitheads, who didn't actually stop to think that this sort of display would be hurtful or offensive to anyone...much less, their one American Indian friend. And as much as I, in my anger and hurt, wanted to believe it was A, I knew in my heart it was actually much more likely to be B.
For several days following the show, I did not speak to Julian. I did not trust that I would not say something that could not be unsaid. And so, I kept my silence. I later found out that Kim had not been so inclined...she had called him the very next day and read him the riot act. Apparently, it really was B, after all. It had not occured to him that Allan's "dance" would offend me, and he claimed he was unaware of the monk's poem (the monk turned out to be a relative of one of Julian's bandmates). I still find that hard to credit, as the poem and the "dance" were clearly inter-connected. I accepted his apology, but it saddened me that after being my friend for so long, he had learned so little from me. I was also saddened when he told me that he felt that I, also, had acted wrongly...that I should have stayed until the end of the show (another hour), and spoken with him then. Which told me that he didn't understand at all.
He didn't understand how hurt and offended I was. He didn't get that it wasn't just the contents of the poem and the "dance." It was the fact that I spent what little energy I had, and had in fact had to struggle most of the night to get to the show, to only be hurt and offended. He didn't understand that as a result of both the physical and emotional stresses of that night, I was sick for a week. He didn't understand the pain of my legs the next day, strained by the standing and the curb and the stairs and the heat...and the relative swiftness of my retreat. And most of all, he didn't understand that as his friend, I was willing to suffer that week gladly, just to see his band perform for the first time...and instead, what I saw was like a slap in the face. And that, that hurt far more than my legs did.
Julian and I remained friends for some time after that incident...but we are not friends anymore. But, that is a story for another time...if I tell that story at all.
So, what did I learn from that "hurtful thing"?
Well, it reaffirmed my belief that anti-Native American sentiment is so ingrained in this society, that many if not most people do not notice it when it occurs...even when they themselves perpetuate it. Julian and Donna were not racists. None of the people there were racists, as far as I know. The people at the show, these are the people who hate racist skinheads, who are pro-gay marriage and pro-ERA. The kind of people who have "hatred is not a family value" stickers on their cars. And yet...they wrote that poem. They set up that show. They dressed up a child to mock what an entire culture holds sacred. And they did it, without a second thought.
But, that was something I pretty much already knew. Can that really count as "learning" something?
I suppose I learned that people who are not disabled often have a hard time discerning what will be difficult or impossible for a disabled person to accomplish. The owners of that club had made no arrangements for disabled persons. The manager stood right there and watched as I struggled up the stairs. It had not occured to Julian to make sure I was on "the list," so I would not have to stand outside.
More importantly, I learned that I had to be more pro-active in those matters. I cannot simply rely on others to tend to them for me. If I had to face the same situation today...I would have called the club well in advance and asked about their accomodations. I would have also made certain I was on the list, or even went with Julian and the band so that I could come in the back entrance (which I later learned had a ramp for band equipment). When it happened, I was still self-conscious about the MS. I didn't want to have to ask for help, or make a "big deal" of needing it. Today, I would see that as nonsense. So, I learned to be more of an advocate for myself, to not take for granted that an establishment would be accessible or that I could simply "muddle through." A good lesson. I don't think I realized until now that I learned that lesson on that night.
I guess I should have spoken up in my chat...I not only learned something, but it did actually apply to my MS!
At 8:42 AM, amanda said...
good for you for learning the ever so hard fact that WE as MS'ers need to learn to accept help and more importantly ASK for it when we need it!!! That I believe is the hardest thing to over come living with this disease.
AS far as the Native American racism I see and hear it all the time No I am not a native but live so very close to the Seneca Nation Reservation and travel there very often it is like 20 miles or less from me. My son't step-siblings are all full blooded natives.