Saturday, July 11, 2015

White Folks In The Western World Don't Need People First Language

Lately, I've seen people posting this article by Colin Cameron called "Why we are disabled people, not people with disabilities", but no one has challenged its premises. It is being accepted by all of the folks I've seen who posted it without any commentary. This isn't surprising given that it reeks of privilege and privileged folks don't have to worry about suffering significant consequences when they contribute to the marginalization of those below them in, especially in Western hierarchical societies. I don't have that option in this case. So, I guess I should start digging into this mess of an article.

It fails to acknowledge the origin of "People with Disabilities". People-first language exists because of the dehumanization we experience. When I say that I'm a WOC (i.e.Woman of Color), it doesn't mean that I'm "disavow(ing) both deviance and race" as Rod Michalko claims. It is asserting my humanity. Likewise, PWD (i.e. People with Disabilities) has nothing more to do with the medical model of disability than WOC is a part of the medical model of gender or race. I am not a Colored Woman. There is nothing that necessarily changes for the better if I switched from PWD to DP (i.e. Disabled Person). Non-disabled people will still think that the "disabled" part of DP means that we are disabled by our conditions instead of by society. This still has to be explained regardless of whether we call ourselves DP or PWD.

If disability was the only marginalization that I faced, then I might be tempted call myself a Disabled Person, but it isn't. I'm Black. I'm Indigenous. I'm a woman. I'm queer. I can arrange these identifiers as I deem necessary given the context of what I'm expressing. I'm not disavowing deviance. I don't even have that choice. In the Western world, only white cis men can choose whether or not to be seen as deviant. Even the cartoon used in the picture depicts whiteness as the default for PWD. If I was Cameron, Michalko, or the person in that cartoon used in the article, I wouldn't need to use people-first language, because my humanity would be already assumed by virtue of my whiteness. When I come into a room, I'm Black even before anyone knows that I'm disabled. Even someone who uses a wheelchair can be seated on something else, which means their disability could be nearly or entirely invisible to the naked eye.

However, my Blackness can never be hidden. I am deviant by default. I needn't worry about anyone wondering whether I acknowledge my deviance. The fact that I get up and face this white-dominated patriarchal society around me means that I choose to assert my deviance in a society that still refuses to even see me as a person. My never-invisible Blackness means that in the Western world I'm not assumed to be human. This is evident from the way that society treats POC (i.e. People of Color). Even among PWD, we are more likely to be victimized by law enforcement, ignored by medical professionals, and chronically unemployed. Because we aren't perceived as humans, this society doesn't think that we deserve these things that white people can feel entitled to.

Michalko and Cameron don't have that struggle. They can move through the world with nothing more than ableism as an obstacle to complete integration in the accepted identities in the Western world where he lives. They are both affluent white settlers on Turtle Island. That, combined with their perceived gender, puts them at the top of the social hierarchy here. There is nothing about having disabilities that prevents them from standing on the necks of Indigenous folks, including those who have disabilities. And so, they do. However, I'm not going to aid them in that effort. I'm not going to ignore their world's responsibility to acknowledge my humanity. When they convince their fellow white settlers to acknowledge my humanity, then I can stop insisting that they need to acknowledge it.

Wednesday, July 08, 2015

The Freedom To Be An Artist Doesn't Come Cheap

The Atlantic has produced a very thought-provoking, but not altogether surprising article about university education. In Rich Kids Study English, the writer discusses the connection between parental income and the majors that college students tend to choose.

I think most of what this article points out is absolutely true. Although, I wonder if the process might be more elongated in POC families. We have more than just financial obstacles to overcome (e.g. racism, misogynoir, colonialism) in the wealth accumulation process. Because of the majors chosen by my family, I wonder if separating these statistics by race would show that it tends to take more than one generation to reach the financial security that frees young people to pursue majors in Arts and Humanities. I am a poet, but even I wouldn't have dreamed of majoring in English or any of the Performing Arts. I majored in Biology. I have cousins who are doctors, teachers, fire department captains, and small business owners. All of them have degrees, but chose majors that were likely to provide a more direct path to particular careers. My dad majored in Computer Science. My child is majoring in Fine Arts. Ze can do that because ze is the fourth successive generation in hir families to attend college and that has given hir a level of security that makes homelessness, joblessness, and hunger things that ze knows ze will never have to face.

To be quite honest, it doesn't exactly matter what sort of degree ze gets. Ze is the oldest grandchild in my family and hir dad's family. My dad has made it clear that if my child gets a degree (in anything) and is willing to change hir surname to his, then ze will inherit his business. I don't think that most 1st generation college students can relate to something that bougie. The surname issue seems a bit trivial to me, but that's mostly a part of my bougie "Black hipster" rejection-of-all-things-bougie-while-still-benefiting-from-the-perks-of-classism. My father is absolutely serious about his surname stipulation. I'm fairly convinced of what this article posits because I think if all or even most 1st generation college students could get a degree in anything and have an established business handed to them when their grandparents die, there would be a significant difference in what they choose for their majors.

The article in the Atlantic also mentions "the possibility that children from higher-income families were more exposed to the sorts of art, music, and literature that colleges deem worthy of study, an exposure that might inspire them to pursue those subjects when they get to college.". I think there's some truth in this, too. My siblings and cousins were definitely exposed to more of these things than our parents. I have a brother and a sister who are professional musicians. One has several degrees, but the other didn't go to college at all. He didn't have to. It's ironic that, even though he never spent a day in college, he spends some semesters teaching courses to music majors. How many people without degrees and without parents with degrees are likely to end up teaching at the university level? However, he was in music programs ever since elementary school and had private music tutors on top of that. My child spent several years attending a pre-school run by my university with excellent arts programs. Even before kindergarten, hir talent in the visual arts was recognized and cultivated. As my child got older, ze went to arts-focused summer camps and visited museums and galleries on a regular basis. The children of my siblings and cousins are also being exposed to the same sort of cultural enrichment. Their bedrooms are covered in water color paintings and craft projects that they and their mothers created together. A couple of them are already in instrumental music programs and performing solos at their spring concerts.

They are unlikely to be affected by the fact that music programs are being eliminated from public schools around the country and those that barely hanging on now have fewer instruments to lend to those students who can not afford to buy one. Those who allocate money for public education don't seem to think that arts are essential for the development of poor children. Heck, they don't even think that these children even deserve facilities that aren't crumbling and lacking air conditioning. Those children from families with more money can afford to counteract the effects of these growing trends. I went to a high school without central air conditioning (Some teachers actually purchased room units to cool their individual classroom). However, I was in the Gifted and Talented program (which more affluent and well-connected families have an easier time getting into) and we had a separate building on campus and it did have central air conditioning. It was actually my family's choice for me to go to the neighborhood school, because I was accepted into one of the more elite magnet schools in New Orleans. I didn't suffer from going to a public school in the way that some students did.

I don't anticipate things changing very much in the future, at least not for first generation college students. Instead, I think the general consensus is that university education is becoming less available to poor students and those without university-educated parents. That may not directly affect me or my child, but it will affect our lives because of the reasons why university is becoming less available. People of Color, queer people, and disabled people are more likely to be affected by the ways that this society is pushing folks into low-paying occupations with little to no job security.

Wednesday, June 03, 2015

A Simple Request

Dear hummus that I just ate,

Feel free to get comfortable in my belly. Make yourself feel at home. I recognize that my totally FUBAR digestive tract may not offer all of the advantages of some temporary abodes, but it does have certain quaint features that you might begin to think of as slightly charming, if not whimsical. I shall be painfully disappointed if you zip through my body like this morning's granola or the medicine that I'd been looking forward to since last night. It really is rude, even for food, to show such disdain for one's host by making such an obvious and quick exit that there was little point in even visiting in the first place.

Monday, May 25, 2015

Why My Activism Is Inextricable From My Religion

One of the (many) things that I love about the Orthodox Church is that it doesn't require me to be a pacifist. We have saints who protected the innocent and vulnerable even when it meant the loss of lives of those who were attacking. Many of them even lost their own lives while protecting others or speaking out against the injustices perpetrated on others.

For me--I'm not saying this is what it should be for anyone else--this religion demands that I speak out when I see exploitation. Hey, if a person isn't doing anything to others, I have no business commenting on their life or spirituality! But, I am to be a radical truth-teller and advocate for what is considered the "dregs of society", those least valued and least heard from and most vulnerable to harm from those with relatively more power.

I'm not supposed to be concerned about whether I am highly regarded in this world, even by other Christians. Often, the most highly regarded Saints were considered absolutely insane by fellow Christians while they were alive (e.g. Desert Fathers and Mothers, other Holy Fools). If the other Christians thought they were insane, one can only imagine what outsiders probably thought of it all. Still, they continued to struggle for the sake of others. Whether some people felt their behavior was odd, unloving, a disturbance of the peace, a disruption of social niceties, or anything else, they continued to be radical truth tellers and advocates for others, even at their own expense.

It should be noted that the "fools" in "Holy Fools" refers to the way that they were viewed by others. It is an acknowledgement of ableism in society, not a true reflection of who that person is.


St. Isidora the Fool of Tabenna,
Troparion in Tone VIII

In thee, O mother,
that which was created according to the image of God was manifestly saved;
for, taking up thy cross, thou didst follow after Christ;
and, praying, thou didst learn to disdain the flesh,
for it passeth away, but to care for thy soul as a thing immortal.
Where­fore, with the angels thy spirit doth rejoice, O venerable Isidora.




Blessed Xenia,
a homeless wanderer of the city of St. Peter
Troparion to St. Xenia, in the Fourth Tone

Having renounced the vanity of the earthly world,
Thou didst take up the cross of a homeless life of wandering;
Thou didst not fear grief, privation, nor the mockery of men,
And didst know the love of Christ.
Now taking sweet delight of this love in heaven,
O Xenia, the blessed and divinely wise,
    Pray for the salvation of our souls.

Friday, April 03, 2015

The Problems with Adoption

I am a person who looked into adoption after I found out that I wouldn't be able to have another child. I desperately desired to raise another child, to have a sibling for my child, to give all of the economic advantages that my partner and I had to offer. First we looked into adoption overseas. We found out that this is an industry where children, the vast majority of whom are people of color, are often needlessly taken out of their communities and extended families and sold to affluent people around the world (mostly in white-dominated Western nations that are responsible for the social conditions that lead to families seeing no other choice than to give up their children). So, that was just too unethical for me to participate in. I couldn't justify taking a child out of their culture just to satisfy my own desires for my life.

So, we started looking into adopting here (Turtle Island aka "The USA"). Well, it turns out that the same thing is true here. It's an industry. Children are shuffled around for the sake of personal and corporate profit. The racial aspects of it are just horrific. As a Black Indigenous woman, I have seen how quickly the state will take a child of color from their family, even when there are plenty of extended family members who would gladly care for their kin. This happens while white families are given multiple opportunities to keep their children even when abuse has been proven. Those who do lose their children usually have multiple chances to get those children back. The same can not be said for families without white privilege. The majority of kids in foster care aren't orphans and the majority do have family members outside of the system. The same money used to warehouse and incarcerate them in "group homes" and "foster homes" could be used to keep kids in their own family. Of course, the state doesn't have anything to gain by that, nor do the other organizations and businesses that depend on this corrupt system of child trafficking.

The Lakota People's Law Project is doing excellent work to address this issue. They are a great starting point if you want to learn what's going on.

You know, something I've admired is the way that many majority-Muslim countries deal with these issues. Even when kids are taken care of people outside of their immediate family, they keep their names and identities. They still have the same rights of inheritance, which means you don't wind up with situations where a person gives up one child who ends up poor and then leaves everything to the children they keep.

I also prefer community solutions. If a person really cares about children, there will always be children they can care for. There's no limit on the number of people who can love and care for a child. We really don't NEED to remove them from everyone they know in order to share in the joys of raising them. In my faith tradition, we have "godparents". Even adults who are baptized into the faith are given godparents. These godparents are responsible for both the spiritual AND emotional and physical well-being of the person they are committing to. It creates family ties instead of destroying them like adoption does. My child's godparents have no children of their own. They dote on hir. If there is anything going on in my child's life, they are there. They are whiter than the driven snow, but they have made themselves an integral part of my child's life. I no longer have to worry about who would look out for my child if something happened to me. I don't have to worry about if my child needed something but didn't feel comfortable turning to me. With me, they ensure that my child will NEVER lack for somewhere to live, food to eat, loving arms to turn to no matter what's going on.

The thing is, all of these things can be done without the religious aspects. There's no reason why we can not create family ties that increase the support systems that children can rely on. There's no shortage of kids who have parents who would welcome extra mommy and daddy figures in their child's life. I don't know a parent in the world who wouldn't want an extra reliable and responsible adult in their life who can be trusted to watch the kids, have them visit over the summer or weekends or for no reason at all, make sure someone is there for open house night as school, join the cheering section in the audience when the child stars in the school play or football game, help with buying school supplies or just pretty trinkets that the kids these days like to have.

We're really only limited by our willingness to sacrifice our own preferences for the sake of children growing up with more love in their life. I've found it very fulfilling to work as a caregiver for two young people who are disabled. This satisfies that part of my heart that still wants to play a mothering role even though my own child has grown up. You can have what you want without participating in the exploitation of kidnapped and trafficked children.

Gender Stories

Today, someone in my social circle shared this article: I Was a Transgender Woman

Here's a different "story". It's just as real. It's the story of my family.

My kid always loved being naked as a kid. That kid would take off hir diaper or anything else the second I wasn't looking. When ze did have to wear clothes, ze would wear any combination of clothes without any concern for their intended use or targeted consumer. Because I loved my child, ze was allowed to wear what made hir happy except for when we went to religious services 3 times a week. This unwillingness to make clothes something we fought over made it possible for my child to make hir artistic flair apparent from very early on.

In Louisiana Creole culture, girls are expected to look like baby dolls. I preferred to let my child get hir hands dirty catching frogs (and returning them to where they were found), making frybread, using my fingernail polish to "dazzle up" everything ze could get hir naughty little paws on. I refused to limit my child's ability to explore the world around hir for the sake of other people's ideas of what a girl was supposed to do. I taught hir that girls could do ANYTHING. We have women in our family who are doctors, attorneys, politicians, teachers, stay at home moms, nurses, et cetera. In fact, the women tend to have more formal education than the men. Women play a very significant role in our Indigenous cultures and girls are prized and pampered.

Since Indigenous women are so often sexually assaulted, ze was guarded like a hawk. My mother had been assaulted as a child and so had I. We wanted to make sure my child never experienced that. Thankfully, we were successful. I never had to leave hir with strangers until ze was old enough to talk and once ze could talk, ze was armed with strategies for dealing with adults that made hir uncomfortable. We lived in a wonderful neighborhood in a four bedroom house in the suburbs as an extended family, so my child was surrounded by aunts, uncles, and grandparents who doted on hir. Ze went to a very exclusive and expensive preschool. Ze went to school with children from around the world and ze was allowed to express hir creative desires. Ze went to one of the city's most exclusive elementary schools where ze had French lessons and swimming lessons and plenty of play time. Even in the schools ze went to, ze was in both the Gifted and Talented programs which meant that ze received the very best that these schools had to offer. Ze starred in community plays, had hir art exhibited in state buildings and galleries across our region. Ze was a professional artist starting in middle school.

In other words, ze has had the life that many parents in this country wish they could provide for their child. With this sort of background, gender wasn't really a limiting thing. Being a girl didn't mean ze couldn't do anything ze wanted, because whatever ze wanted to do, you can be sure that my politically connected and financially comfortable family could make it possible. I'm not bragging, I'm simply stating the truth. So ze never grew up with the idea that it was a hindrance to be a girl. I made it clear from when ze was young that I was having none of that nonsense about girls not being good in math or that girls can't achieve anything. My dad was a math professor and I was proof that these ideas were false. My kiddo also showed a great deal of aptitude for math (better than mine, actually). In other words, there was never a point where ze had a reason to prefer to be something other than a girl.

At certain points, my kid expressed some worries about the idea of growing up to be a woman. I thought it was because ze didn't like the idea of menstruation and ze'd absorbed some negative messages about it from the outside world. Over time, it became clear that this wasn't hir issue at all. Ze never had an issue with those natural processes of the body. Ze simply did not relate solely to the identity this culture refers to as "girlhood" or "womanhood". I had no language to describe such feelings, so like most folks I just ignored it and figured it was some passing whim. Only, it didn't go away. Ze would go through long periods where ze could not be induced to wear "girly clothes" no matter how much I cajoled and bribed. Then ze would go through long periods where ze wouldn't leave out of the house without super fancy eye shadow styles and would use her pin money to buy cosmetics that I'd never even heard of (What the heck is BB cream?).

One day, my kid showed me a tumblr page ze had created. In the part about hirself, I saw that ze had put that ze was "bigender". I thought ze was a bit confused and I told hir that I think ze meant "cisgender". Ze informed me that ze knew quite well what ze had written and that was the proper term for hir. I wasn't exactly sure what the heck "bigender" meant so I just politely backed off and googled it.

I'd heard of transgender folks and I thought it basically meant someone who didn't think the body they had matched what they knew about themselves and needed surgery to feel comfortable with their body. I'd never heard of trans* folks who were quite comfortable with the bodies they were born with and had no desire to change them. I'd never heard of people who considered both "girl/woman" and "boy/man" to be terms that didn't describe them. Even trans* folks were either one or the other, I believed.

Around that time, I was making the effort to preserve and pass on my child's rich cultural inheritance. I wanted hir to know hir French aristocratic roots and hir privileges as a descendant of the Gens de Couleur Libre, and a member of Indigenous nations that had been proudly matriarchal for thousands of years. Because we are so matriarchal and ze was (thought to be) the oldest girl in that generation of our family, I'd been grooming my child to value keeping the family together and being the bearer of our history. Ze loved it. Ze has never dealt with confusion about who ze is or where ze fits in racially. Ze decided that ze fits in wherever the heck ze wants to. That was as I wanted it. I wished I could have been so certain about these things during my childhood as a person of mixed heritage. I guess I shouldn't be surprised that ze was also just as certain about who ze was with regards to gender.

In the process of learning more about our matriarchal Indigenous roots, I came across information about gender. Of course, in our cultures there's a "nobody left behind and everything has its place" commitment that I already understood. But I'd never had any reason to focus on our gender roles, identities, and expectations. It turned out that there was a very long history of people like my child. There were still social prohibitions about who such folks could and couldn't marry, but they were also extremely prized and it was/is considered a great blessing to have such a person in your family. They are often turned to for advice about relationships because they are both a part of and outside of the most common gender identities. They saw the world as we often can not and had the role of helping others find their place in the world. My child's identity wasn't something new. It wasn't something foreign. It was lovingly appreciated.

Over the years, my child and I have been able to connect with many others like hir. This isn't a novelty for our people as it is perceived in Western cultures. This isn't something that I "raised my child to be". This isn't some disorder or dysphoria. This is my child as God, the Creator of All Worlds, made hir. We aren't some people out there fighting for "gay marriage" or to make some point about lifestyles. This just is.

Thursday, April 02, 2015

Suicide and Survival as a Black Indigenous Person in a Settler Colonialist System

Racism at Core of Teen Suicides in Pine Ridge

The first time I was committed to a "mental hospital" I was fourteen. I'd already tried to commit suicide several times. I felt such despair that while I was in the hospital, I carved the word HATE into my thigh. It wasn't even a really conscious thing. I felt so numb from the horrors in my life that maybe my mind was looking for some way to finally be taken seriously, finally find some way of expressing what I felt about myself.

The second time I was committed, I was twenty-one years old. My white doctor had ignored my medical history and prescribed medication that exacerbated the schizophrenia I've had from childhood. I'd found ways to survive with the schizophrenia. I'd learned to try to keep it from being detectable. I often failed and the world around me never missed an opportunity to remind me that I was "nuts", "insane", "acting out" et cetera. The medication, a steroid known to cause exacerbation of neuroatypical "symptoms", was given to me and then the dose was quadrupled. With no support system and no medical establishment that gave a damn about me, it became unbearable and I attempted suicide again. Having caused an interruption in the daily routine of being sufficiently productive in the eyes of settler colonialists, I was instantly punished by being committed.

After that period of punishment was over, I was released into the world almost no different from when I came. The medicine was out of my system. I made the proper assurances that I would not make another infraction. And I went back to the world that was poisoning my spirit.

To be honest, I don't even know how I survived. I think it was the cancer. The cancer hardened me. It forced me to become a survivor. I had a kid that needed to be protected from the sexual assault and neglect that many/most neuroatypical Indigenous children experience. I don't think I survived for my own sake. It was the determination to try to prevent at least one child like the one that I had been from going through the horrors that I can never forget.

Tuesday, March 31, 2015

In the Drug Wars, People With Disabilities Are Often Collateral Damage

"Oh, you want heavy narcotics strong enough to kill an elephant? Okay! But first let's make sure you aren't using anything harmful like marijuana."

This is what I go through every eight weeks and that's when things are going well. When my body is in the middle of a lupus flare-up or some infection or another creeps in as a result of being immuno-compromised, I have to go every four weeks. I've been living this routine for the past five years, ever since I asked my oncologists to help me find a way to start taking less medicine. It's a bit of a pain (no pun intended) to be tied to this schedule. However, if it was just that straightforward, I wouldn't complain. Unfortunately, it's not.


You see they also tell you to drink lots of water before you come, because they won't give you a prescription for your meds unless you provide a sample for the urinalysis. Of course, if you DO drink lots of water, the hydrocodone may not show up in the test. If you don't have a "reasonable" amount of hydrocodone showing up on your test, it can be assumed that it's because you're not actually taking the medication and must be selling it on the streets. So the doctor may or may not decide to keep issuing the medication. If you have more than what they think is "reasonable", then they may question you about whether you're taking it as prescribed. The result of this is that, even though I don't use any illegal drugs, I still never know whether or not I'm going to run into a problem.

Today, I had to wake up before the crack of dawn just to get to the appointment on time because the doctor's office is an hour and a half away. So, I had to take my morning dose of narcotics earlier than usual. It's the only way that I can get dressed without being in an excruciating amount of pain. By the time that I got to the appointment and sat there for an hour past when they were supposed to see me, I'd had quite a lot to drink. So, I figured that was a good thing because I wouldn't have much trouble providing them with what they need for the test.

Unfortunately, since I've worked to decrease my dose to just the bare minimum that I can take and still function, the sample I gave them was so diluted that they couldn't really detect any hydrocodone in it. As a result, I had to sit there and plead my case and get grilled about what time I got up, what time I took my meds, what time I usually take it, what I ate and drank this morning, and how far the trip is from here to there. Thankfully, I was able to satisfy them enough to get my prescriptions refilled.

This is how they treat a person they know has a painful bone cancer in her chest and a completely separate, comorbid, progressive, and incurable disease that also caused undeniable damage and pain to the body. I shudder to think about how this would have gone if I was someone with a condition that isn't easily detectable and verified by several specialists in several branches of medicine.