Tuesday, June 28, 2016

The Ableist = Me: an apology


I screwed up yesterday.

I gave a presentation in front of hundreds of people last night, along with several of my colleagues. It mostly went pretty well. I was informative. I was candid. I was witty. 

And I was ableist.

I say this because I am a huge proponent of growing and changing. Learning how to be better. I am not above reproach, and when I am in the wrong I need to be truthful about it, apologize sincerely, and strive not to err in the same way. I might not always succeed, but it has to be a priority.

I ended my presentation by asking the people who were part of the HIV community "to stand and remain standing," followed by a similar request for staff, researchers, and allies to do the same. In closing, I said something to the effect of, "At this time, everyone in the room who can should be standing. Thank you for all that you do, and let's continue standing together - until there's a cure."

This ending was suggested to me by a good friend, and I agreed to utilize it. His suggestion in and of itself was not ableist - the way I conducted it was.

I view "standing" as not necessarily something that requires "being upright on two legs." If someone is in a power chair or scooter; if someone is on crutches or using a cane; if someone is leaning on someone or something I still consider them to be "standing." Similarly, if I have a conversation with a non-speaking or Deaf friend via text or IM, I still view that as us "talking." I don't think that "talking" has to mean speaking aloud. I consider people to be "using their voice" if they email, tweet, or otherwise share their thoughts.

But it isn't about what I think or how I perceive these terms (not to mention the way I worded it was far less than ideal). It's about the way they are typically perceived by others. Society largely considers "standing" to mean something different than what I do. Dictionary.com defines the verb stand in this way: "to be in an upright position on the feet." Its secondary definition is "to rise to one's feet."

Merriam-Webster dictionary provides the following primary definition for the verb stand: "to be in or take an upright position on the feet." It does provide a more inclusive definition as the secondary definition: "to take up or stay in a specified position or condition." But primary definitions are often considered the "main" definition of a word.

There are other dictionaries that take a more holistic view of what it means to stand that is less ableist, such as the Cambridge dictionary: "to be on your feet or to get into a vertical position or to put someone or something into a vertical position," but you get the point.

I did not clarify what I meant, and thus I othered the people in the room who are in wheelchairs, have limited mobility, or who might be technically able to stand but are not comfortable doing so. I effed up.

I didn't mean any harm. But no one does when they are being ableist, or racist, or homophobic, or whatever. It isn't about my intentions, though; it's about the results of my actions.  I know I am not perfect, but it grieves me to think that by being careless and not communicating clearly I unnecessarily added to the micro-aggressions that people already deal with all day every day.

In a room full of people, many of whom are living with HIV, I had no right to request anyone to "stand" knowing the issues with neuropathy, joint pain, inflammation, bone thinning and loss, and aging that are prevalent within some, perhaps several, of those present. And as an Autistic woman who comes off as an extrovert but is actually an extreme introvert, I should have known better than to request that people stand, knowing how uncomfortable it might be for some people to have to stand up while everyone is looking at you - even if you are standing up with numerous other people. The presence of other people standing too doesn't lessen the anxiety factor. There could have been, and likely were, people with social anxiety or other things that might have made being asked to stand uncomfortable.

I could have easily inserted a statement that made it clear what "standing" meant. I could have offered people an opportunity to raise their hand instead, or to identify themselves in some other way that more people would be likely to participate in without being left out. Or something.

But nope. I didn't do any of that. And even worse, it wasn't until this morning that I realized how completely messed up my choices were.

I lived three decades of my life not knowing I was Autistic. I am still navigating my identity as a disabled woman. I embrace it - just as I embrace being African, being a woman, being black, being Christian, being a parent. I'm not struggling with accepting who I am. But I cannot deny that the ableist construct that permeates society has impacted me, and in some ways I still have problematic aspects of my language and actions that are still in the process of being purged. I need to be more mindful. It isn't okay to make people feel like crap because I was imprecise. I don't get a "pass" on my screw up because people might think that I'm a nice person.

To anyone who was in the room whom I offended, whether you are abled or disabled, I am truly sorry. To anyone who was not in the room whom I offended, I apologize. And maybe you weren't offended, but were disappointed. Or saddened. Or shocked. Or annoyed or angered. Whatever emotion I caused you to feel, I take ownership and I take responsibility. I effed up, and I was wrong. My intentions don't erase the reality. Please know that I recognize why this wasn't appropriate, I regret it, and I will try hard to do better, God as my witness.

And if you're reading this and you're like me - someone who should know better - or if you haven't done something like this, but don't know how you would handle it if you unintentionally misspoke in a similar manner, I hope that you learn from me. Be thoughtful of what you say and do before you say and do it. Constantly evaluate yourself after the fact also to make sure you are not alienating others. Know that you are never "too good" to apologize and to improve. 

Thank you to all of you whom I learn from every day. Bit by bit, I hope I am shaping up to be who God made me to be.


Image is a meme whose text reads, "Own your mistakes. That's the only way to own your success." -Hrithik Roshan (Source: rainboz dot com)

Friday, June 3, 2016

More Than Our Vices: About Prince's Overdose

So let's talk. 

Even before the official cause of death was revealed, the media had been swirling with allegations of Prince's alleged addiction and all the related drama. 

Y'all know how opinionated I am. So here's my two cents on the topic. And for the sake of clarity, as a lifelong Prince fan and a Minneapolis-born (though Texas raised) Black woman, before anyone feels the need to point it out to me, I am aware that I am biased. However...

I need to say that it bothers me just as much that people are saying some of the cruel things they are saying about Prince's alleged addiction as it did when people were making snide comments about Prince's suspected HIV status. Okay. I get it. It has been confirmed that the cause of death was an overdose. Point noted. That, however, is not enough to shut me up. 

First of all, addiction is a disease. It is not a character flaw. It is not a personal failure. It is an illness - one that is not well understood and often inadequately treated. Slandering individuals who are in active substance use helps no one, and certainly doesn't lead to higher rates of sobriety. Slandering those who are no longer living who struggled with substance use is equally disconcerting. I'm not saying don't discuss it at all. It shouldn't be a forbidden, untouchable topic (such mentalities only fuel addiction). I'm saying there is a way to discuss the issue and the people affected by it without being dehumanizing, holier-than-thou, and disrespectful.


Aside from that, though, I am bothered that there is a lot of generalization going on too. I don't know the intricate details of Prince's opioid use. But I do know that some of the greatest casualties of America's "war on drugs" have been people of color, people with unaddressed mental health issues, and people with chronic pain. 

I want to be clear that I don't believe in "ranking" substance use. I don't think the person who snorts cocaine is "better" than the person who smokes meth, smokes crack, or shoots heroin. Or better than the person with an alcohol problem. Addiction is addiction is addiction; there shouldn't be some type of hierarchy. One only need look at the differences in sentencing penalties for different drugs frequently used by certain ethnic groups to have an understanding of the underlying racial and other issues that are intertwined with having unfair levels associated with different drug offenses.

But despite that, I feel that I need to speak up. And huge disclaimer: I am no LCDC nor do I have professional nor personal expertise with regard to substance use. I can only share my opinion - and I welcome feedback from those who know more than I. But in the interim, here's my opinion:

It is irresponsible and misguided to merely "write" Prince off as just another celebrity "addict" without exploring the issues that exist in this country with regard to chronic illness and pain management.

My daughter lives with chronic pain and fatigue. She can predict if it's a cold or a rainy day by the swelling of her joints, much like many senior citizens. She falls asleep in the middle of the day. She has had to drop out of nearly every physical activity she once enjoyed: dance, creative movement, karate, as she could no longer keep us with the physical demands. She was almost retained by her school a few years ago because of excessive absences. I sometimes hear her trying to mask her crying at night as she tries to endure the pain she faces daily. She puts on a brave front around most people the majority of the day because no one wants to hear anyone mentioning day after day how much pain they are in, even if it is true. But it's hard to wear that mask 24/7. It takes a toll. When all you want to do is just. Stop. Hurting.

For the person with chronic pain, many of the typical pain remedies that work for the rest of us are utterly useless. Sadly, some, perhaps many, people, including providers, find this hard to believe.  People with chronic pain find themselves being suspected of "drug seeking behavior" when they report that a certain medication isn't effective for them, or that they need higher and/or more frequent doses of certain medication in order to obtain just a little relief. I'm not belittling the fact that prescription abuse is a very real phenomenon and that there are people out there who exaggerate or even completely falsify symptoms in an attempt to obtain medication they might not actually need. Yes, this happens. But there are also people who are in actual pain whose needs aren't met because the worst is so often assumed of everyone.

And there can sometimes be a fine line between wanting relief and finding oneself growing increasingly dependent. No one strives to become addicted. It can often happen very subtly and gradually, and a person may already be deeply in the throes of addiction before they are truly cognizant that there is a problem. 

I have a naturally compulsive personality. When I'm into something, I'm all in. I believe strongly that had circumstances in my life been different, I could have easily developed an addiction as a result of this - the way that I am. I am the last person who should ever pass judgment on someone for their addiction. However, there is no one picture of addiction. People use for different reasons and everyone has a different story. It isn't respectful to make assumptions about "those people." Whether "those people" are celebrities or every day people, they are still people. You don't know what truly motivated them to do whatever it is that they do. To assume that they are "just like all the rest" is unfair. Who are "the rest" anyway, and who are any of us to categorize whole groups rather than seeing them as individuals?

What we should be doing is having frank, open conversations about all of these things. About substance use. About addiction. About pain. About a system that punishes instead of rehabilitates. About many things. And we should be listening to people who know something about this topic and can share much-needed wisdom with the rest of us. People in recovery. People who live with chronic pain. People who have a broad view of this topic and can contribute more to this topic than gossip. That's what I would like to see happen. I don't know if it's what I will see, but I hope it comes. 

Addicts are people. They are someone's child; someone's sibling; someone's friend; someone's significant other; someone's parent; someone's boss; someone's neighbor. They are more than just a list of shortcomings; more than the mistakes they've made; more than the substances they ingest. In people's rush to condemn Prince for his actions, I hope that they remember he was human. Human - and therefore imperfect, like all the rest of us. And one of this country's most talented musicians with a career that spanned decades. I hope he will be afforded the same courtesy afforded to many deceased artists and will not be solely remembered for how he died, but will instead be celebrated for how he lived.