Tuesday, May 16, 2017

A birth day; a death day. D@mn, my life sucks.

Today is the day my oldest son (AKA my Liberian prince AKA my little man AKA Human GPS) turns sixteen years old. Sixteen years old.

The shy, chubby faced little boy who entered our family several years ago has blossomed into a young man. He's taller than me. His voice has changed into a deep tone and he has a visible "Adam's apple." He's old enough to drive (as he has mentioned many, many, many, many times). He's old enough for a part-time job. His feet are ginormous - as is his appetite (though he miraculously seems to burn the calories as fast as he consumes them; his metabolism must be "sky high" I guess). He's still my sweetheart, but he's definitely not a kid anymore. Before my very eyes my little boy has evolved - has grown. How time changes things.

Today is also the day that I visited the obstetrician to begin the process of addressing my "missed miscarriage" (or was it "incomplete miscarriage?" Need to check the papers). One day I was a beaming mother-to-be of twins; another sad day I was a woman reeling in pain from hearing the words "No more cardiac activity." A dizzying array of thoughts swarmed through my mind in a series of seconds-long flashbacks of the last several weeks: my joyful surprise at learning that I was pregnant; my shock and subsequent elation upon learning that there was not one, but two little blessings inside me; my intense fear when I experienced unexpected cramping and bleeding; my incessant prayers for protection over my womb. Silence in the room as these moments flooded my thoughts - and then the silence was filled with my raw, grief stricken cries.

What a detestable day that was. The day the laughter died; the day I learned the babies died. That day - just last week, but it seems so long ago now - has come and gone, but the pain has not. Nor have the vessels which once housed potential for future life and love. Though my hope, my happiness, my dreams were savagely ripped from me that awful night, the physical evidence remains. Their souls might be gone, but their bodies are still with me. Still part of me. Still in me...

How time changes things.

I need, they say, to purge the "tissue" from my uterus. Get rid of "the remains." How cold and impersonal such language is, the language used to discuss what to do with the problem...the problem that is what is/was the bodies of my deeply wanted, deeply loved change-of-life babies. I wondered who, what they'd grow up to be...but it seems that I wondered in vain, as they will never grow up to be anything. They will never grow up at all, and they have stopped growing. They are gone - but like a cruel joke, they aren't actually gone. They are still within me as I type...almost as if they're still holding on. Like they don't want to leave me, don't want to let go, don't want to go. Their hearts are broken and so is mine. The difference is that theirs is devoid of movement, beating, activity; mine has all of that, but is devoid of hope, of joy, of purpose...

The day after. I went to the OB for the first of now four post-emergency room doctor visits.  After the devastating news, this step seemed like little more to me than a billable formality. Another set of ultrasounds; more blood work; more urine; more vaginal swabbing/pelvic examining/platitude murmuring about loss/small talking/stating of miscarriage statistics and the likelihood of chromosomal abnormalities especially given my "age" and my fertility issues, etc. I nodded and spoke at the right intervals as expected. But I felt like a robot, a ghost, a zombie...something not really human, not really alive. However, I know how to perform. How to switch on when needed. How to jump through the hoops. It never really leaves you, that skill. It becomes you, and you become it - it is a clever parasite.

They did all their exams and scans and labs. Had me come back and repeat them again.  Compared them to my other reports/visits. And made the final determination confirming what I had already been told and knew to be true. Though a part of me secretly hoped it to be wrong, a mistake, untrue, I knew otherwise.

With miscarriages, it seems that there are a slate of options one can consider. Thus, you can pick the lesser of the evils available to you. One of them is "watchful waiting" for "nature to take its course" over a period of hours/days/weeks for your body to finish the process of miscarrying. Another is "medical management" where you are given medication to hasten the process. There is also "surgical treatment" where a doctor uses a surgical procedure (such as dilation and cutterage or other means if warranted) to complete the removal.

I envisioned this day so differently. It was supposed to be all about my little man like all birthdays are around here. In my household, birthdays are our kids' "Christmas" or "Hannukah." It's the day it's all about you. The day you get to shine. The day we get to celebrate the role you play in this world on the very day that you entered it...it's a day of cupcakes at school; cake at home; dinner of your choosing with the family even on a school night; hugs and prayers and love - and gifts. It's a day of laughter and a day of promise. It's a day we look forward to for months because it only comes once a year.

But today, it's a day of, "Mom, please don't do anything for me. Please don't bring anything; please don't buy anything. I just want you to get better. Please just stay in bed and be okay."

It's a day of cramping. Of bleeding. Of lying down with a protective covering beneath your hips and extra absorbancy adult undergarments clad around you. A day of whispered tones and worried glances cast your way from the doorway. A day of pizza delivery instead of a nice restaurant birthday meal for your precious son. A day of painkillers and a day of nausea. A day that threatens to imbrue, to obscure, to sully, to dampen the beauty of the day God allowed your son to be brought into this world by his beloved, never-to-be-forgotten late mother.

It's a day where your tears drench yet another pillow and your breath comes in ragged puffs; where the depression threatens to drown your very soul with grief; where you cannot muster enough energy to be angry at God but wish you could; where you feel selfish for all of these thoughts because you have a house full of children, adopted and biological, while some have none.

It's a day that hurts. A day that sucks.

A day that still hasn't ended.

Please God, just let it be over soon.

Let me sleep and pretend this was all a nightmare. Not reality; just a terrible dream. Because dreams end, just like little babies' heartbeats end. Dreams end...I just want it to end.

(Image is one I can't really describe well. It is a human face contorted with emotion as a myriad of objects either surround it or are emanating from it. It comes from a Columbia Science Review article about pain, and it resonated with me because it's how I feel - surrounded by pain with pain also spilling out of me.)

Saturday, April 1, 2017

Please Help #GuardJaylonsFuture (a request for help for a friend)

From middle school through a portion of our college years, we were THE crew.

My girls - sisters not by blood but by choice.  We were somewhat of a unique bunch, all different, yet in many ways the same. We all had quirks, but that was a lot of what bonded us to one another.  We had our disagreements, but we loved each other and were loyal to one another.  Whether it was family troubles, monetary woes, school-related stress, boyfriend drama, health ailments, or something else, we knew we could count on one another. We all went to each others' school dances, each others' houses, each other's boyfriend's houses, etc. Later, each others' dorm rooms, each others' college graduations, each others' wedding and baby showers.  We added people and lost people, but at the core we were still the crew. Friends. Sisters. For life.

One of those friends was Shauntel. Shaun was the first black person I ever met who knew sign language (because of her Deaf sibling), and as a young girl through her I learned a lot about Deaf culture and disability acceptance. Her family didn't buy into the narrative that disability was a tragedy, and neither did she. In many ways, I have her to thank for my entry into disability advocacy years later; she planted the seed back in middle school and has been one of my biggest supporters as I've come into my identity as a disabled individual as an adult.

B.C. (before children), we all used to hit the clubs and have fun for hours dancing. It wasn't about the clubs, though; it was about feeling the music and having a great time together.  We've always enjoyed one another's company, even way back when. I have fond memories of watching Shauntel and another one of our friends, Miriam, dress up, put on waaaaay too much hair gel and makeup,  choreograph dance moves, and perform one of their many home videos to songs by Mary J. Blige or SWV. I might even have video footage… (AKA potential blackmail material, lol).

But life happened, and we all grew up.  I won't say that we grew apart per se because we never stopped caring for one another, but we did kind of function apart.  College, marriage, kids, families, life...long stretches of time often passed without any communication.  But whenever we get together, it's like nothing changed.  All of us, our big group, are still sisters for life.

(I dare not post many pics from our younger days because I was a little too fond of short skirts and tight clothing, lol. My choice of clothing back then was not exactly what one would call modest. But here are a few when we were older.)

(Pics of some of our gatherings; this one is from December 2007.)

(Pics of some of our gatherings; this is a birthday get together about 7 years ago I think?)

(Pics of some of our gatherings; this is a girls' night from about 3-5 years ago.)

(Pics from some of our gatherings. This pic was just last year when we were bridesmaids at a member of our crew's wedding.)

Shaun was one of the first of us to get married, to her longtime high school sweetheart. Now divorced, she is an amazing single mom to five great kids.  She has three black male teens, and has kept them out of trouble with the law and out of gang activity or other vices that are risks many black youth from single parent homes face.  Her daughters are confident and studious young ladies. Shaun has always strived to impart positive values in all of her kids. She works hard and has always been there for others even when she had little to give; she will literally give her last. Even when she is down, she is willing to help a friend with a kind word, a laugh, a shoulder, some advice. She is a good mom, a good woman, and a good person.

Pic of Shaun = #BlackGirlMagic in the flesh. 

(Pic of Shaun's beautiful five kids, all from her marriage to her high school sweetheart.)

The pic immediately below is a picture of one of Shaun with one of her sons.
Meet Jaylon. Isn’t that smile adorable?

Mom/son "ussie" of Shaun and Jaylon. I just love how happy his smile is.

Until this week, Jaylon seemed to be on his way. The high school junior, a first team all-district guard on his high school varsity team, was overjoyed upon receiving invitations to represent his state at various spring and summer basketball competitions, camps, and tournaments as close as El Paso, Texas and as far away as Australia. These opportunities would provide national exposure and increase his likelihood of catching a coach’s eye in hopes of obtaining a scholarship in order to fulfill his dream of attending college. Neither he nor his mother Shaun, who is his biggest cheerleader, could contain their joy.

And now it is all at risk of coming crashing down. A worker in an at-will employment state, Shaun recently found out the devastating news that her position was being eliminated and that she would be unemployed within days. Filing for unemployment while she actively seeks a new full-time job will help keep a roof over their heads and keep them fed. But it will not pay for registration fees, airfare, lodging, and the other expenses associated with these upcoming opportunities. She had intended to use earnings from her job to cover those costs. Now, unexpectedly, her means to do so has been stripped away, and she needs help to be able to provide these critical opportunities for her son.

Jaylon is a good kid with a strong sense of ethics. He’s more than just an athlete; he’s a good student; a respectful young man; a helpful big brother and thoughtful member of his community. However, as long as any of us could recall, Jaylon has been happiest when he has a basketball in his hands, and since the 5th grade he has been winning basketball championships year after year. He loves to play basketball; something about the game transforms him. It is evident by the gleam in his eyes; in the strategic movement of his limbs; in the rapid, rhythmic movement of his body...like an internal dance. He is one with the ball, and it obeys his command - almost as if it is as captivated by him as he is by it, his first love. Jaylon, who is frequently featured in the local papers as a leading member of his team, does not just enjoy playing basketball; Jaylon is not just skilled at playing basketball. He was born to play.

But to Jaylon’s family, basketball represents more than just a game. It represents an opportunity for a brighter future. Left with five children to raise as a single mother after her divorce, Shaun has worked single-handedly to support all of her children with little additional financial or emotional support. Additionally, she has encouraged her children to maintain involvement in positive activities to prevent them from falling into the trap of crime and violence that befalls so many other youth of color from modest means. Their family doesn’t have much in terms of material wealth, but they have everything that they need, and they have one another - a value far greater than wealth.

If not for this sudden loss of employment, Jaylon’s trips would be covered as his mother fully intended to budget as necessary to pay for it, as she has always worked to meet her children’s needs. But now their family is in need of help or Jaylon will have to forfeit these potentially life-changing opportunities that can serve as the lifeline between a life of struggle and a chance to pursue higher education.
As I mentioned previously, I know this family well; Shaun is one of my oldest and closest friends. She has ALWAYS provided for herself and her children, and to need to ask for help in such a manner is not something that she has typically done. That’s why I decided I would create this fundraiser for her, because I KNOW the help would be a huge blessing to her son. I can 100% vouch for this family that they are the real deal.

If you are able to help donate and/or share the link to the fundraiser, which is https://www.youcaring.com/GuardJaylonsFuture, I would be extremely grateful for your kindness.

Pic of Jaylon on the court, concentrating so hard that his tongue is sticking out!

Thursday, March 30, 2017

Twelve Days

My mother told me that when I was a baby/toddler, I had a fascination with the song “The Twelve Days of Christmas.” I used to script it constantly, singing it at socially inappropriate volumes (i.e. extremely loudly) in public places as well as at home - even when it was nowhere near Christmastime/winter. Another mother would have probably been embarrassed, but she just thought it was cute, and admitted to sometimes joining in with me.

Interestingly enough, today marks twelve days away from a very significant day in my life and my family's lives. In twelve days, the fate of our family will be determined in court. After tens of thousands of dollars spent on legal fees; after over two and a half years of uncertainty; after tense, unfruitful hearings and mediations and motions and extensions. It all comes down to now. It all comes down to that day. What the judge will say. Whether we will continue to be a family as we have been for nearly six years or whether we will be splintered and torn asunder.

Twelve days.

Twelve used to seem like such a monumental number when I was a kid. A ruler was 12 inches. A year had 12 months. The clock had 12 hours on it. We learned our multiplication times tables up to 12. People graduated after 12th grade. There was even a popular song (which I have chosen to no longer listen to again in life because its creator is a child molester) called “TwelvePlay.”

But 12 is just an ordinary number. A number like any other number. Not any more significant than any other. It’s just 12. One larger than 11; one smaller than 13. The fact that it is the same number I used to sing about as a toddler is irrelevant. It’s not a sign of anything.

I decided some time back that I wouldn't be scared. That I wouldn't be anxious. That the situation was in God’s hands, and that I needed to be positive and keep an open mind. That these are MY children, and that they are home - and will remain home. That worrying changes nothing.

I want to feel that way. I want to feel that way so badly. To be secure. Not to fear. Not to stress over it. I want to trust that God’s got me and that we will be okay.

And I do feel that way. I do...but not every second, you know? Sometimes doubt creeps in. I'm just being real.

But I'm not going to be consumed with doubt nor let it determine how I live and how I interact with my children. They know me; I can't fool them. So I let them know that it's okay to be scared. It's okay to not know. And it's more than okay to have hope, to dream, and to want to see that dream realized.

Unfortunately, for far too many people, my dream is as unattainable as a trip to Saturn. My simple dream - to be granted the opportunity to parent my kids - is one that a lot of disabled parents won’t have. There was a hashtag a few years ago that caught my eye: #DisabilityIsNotACrime, it declared. I would like to think that’s true. But is it? Because many disabled parents would argue otherwise. In 35 of the the 50 states in the US, the law allows that parental rights can be terminated solely on the basis of disability; in 10 of those states, this can happen even if there is NO suspected abuse or neglect. So essentially, with regard to family law, being disabled IS a crime - it’s reason enough for you to lose custody of your children.

This type of discrimination against disabled parents is not limited to termination of parental rights; it also occurs in custody battles where a disabled parent might not be given the same consideration as a nondisabled parent who is also seeking custody. It is also prevalent in child welfare on the “front end” with regard to public and private agencies; many disabled parents are denied the opportunity to build their families via adoption and/or foster care as well due to ableist notions that assume that such a parent will not be able to adequately meet a child’s needs.

Disabled teens and adults are often denied the opportunity to become prospective parents - and that’s because they are often denied the right to fundamental, basic bodily autonomy including sexual and reproductive rights. More plainly, a lot of people can’t seem to wrap their minds around the fact that disabled people have sexual urges. Not all disabled people, no - just like not all non-disabled people. Asexuality exists, and there is nothing wrong with it; some people have other, equally valid ways of meeting their needs that are nonsexual. However, just because we are disabled doesn’t mean that we don’t have any interest in sex. Why wouldn’t we?

It isn’t disabled people ourselves who have an issue with us and the idea of sex. It’s all the rest of y’all. People tend to infantilize disabled people; or view us as broken; or deify us as being “too special” to need to be bothered with “that stuff.” It’s the reason why a number of individuals with disabilities are not provided with comprehensive sex ed; it’s the reason why contraception, fertility treatments, and/or family planning options are frequently not recommended to disabled individuals by their medical providers; it’s the reason many disabled people were sterilized against their will for a number of decades in different parts of the world.  And it’s ableist - whether it is coming from loving, well-intentioned but ableist caregivers, from restrictive and dehumanizing policies of a facility/institution/residential program, or something else entirely. We enjoy a good orgasm just as much as anyone else; disability doesn’t change that.

So many problems. We’re still fighting to be viewed as people, let alone parents. Sadly. We’re still fighting for basic human rights. The right to live. To vote. To work. To be educated. To access public spaces. To communicate. To access health care. To utilize services. To have adequate representation. To make decisions about where we live, how we spend our money, how we pursue recreation, who we have around us. We’re still fighting not to be perceived, addressed, and treated like we are helpless merely because we are different.

We are fighting for things we shouldn’t have to fight for.

As an individual with a “hidden” disability, I am extremely aware of the privilege I possess. It is ironic sometimes...existing simultaneously as a person with multiple marginalizations and as a person who experiences privilege in a variety of ways - yet still simply being me. However, it is not lost on me that it is only after identifying publicly as a disabled woman and living my life publicly as such that I began to face opposition with regard to my ability to parent my children - never before, when I was perceived as nondisabled. It wasn’t me who changed; it is the manner in which certain individuals perceived me. I was the exact same person; however, seemingly nondisabled me was thought of as perfectly capable of raising my children and meeting their needs while apparently disabled me, the actual me, was suddenly incompetent.

Prayerfully in twelve days I will be triumphant. My family will remain intact. The unjust, ableist, system that attempted to separate us will hopefully find that this time, this one time, it didn’t win. I hope this, earnestly. And I pray this, with every ounce of strength, faith, and hope I possess in me.

But though I might win, it is more likely than not that on that same day, others will lose - other disabled parents. Or on day 11, which is one less than 12. Or on day 13, which is one more than twelve. You see, the statistics, the odds...they’re not in favor of disabled people, disabled parents. It doesn’t look promising for most disabled people when you think about it, when you review and ponder the numbers.

And at the end of the day, no matter how many times you sing it, twelve is just a number. Not a guarantee.  

Image of the word "twelve" and the numeric symbol 12. Photo credit: Twelve Lumion Directors.

Monday, March 27, 2017

Maybe a break? Maybe not?

Weird title, I know...

So if you've followed my blog for a while you probably know that writing is my therapy. I write when I'm happy. I write when I'm upset. I write to make sense of things. I write even when things don't make sense...

Right now, a lot of things in my life, and about me, don't make sense. So in order to preserve the rapidly dwindling supply of spoons that I possess, I'm taking a break from a lot of things that I love. Certain groups, certain activities, social media. Too bad I can't take a break from work too (these bills aren't going to pay themselves, though). And obviously I still have family responsibilities to attend to (moms never get a day off). But anything that I don't HAVE to do, for the most part I'm not doing.

Writing, however, has never really fallen into any true category. It isn't something that I am required to do; it's something that I do because it's a part of me. In some ways, I can't imagine myself not writing any more than I can imagine myself not breathing. But I don't know if words will come to me or not. My mind is so overwhelmed and overflowing. Maybe it would be of benefit to calm it down for a little while, let it go silent.

I'm not sure yet. Usually even when I step away from everything else I still might produce some written material. It is my first language after all. But right now I don't know if I will do so or not. I might need a little break from that too. You'll know if you don't see any new posts from me for a while. I'll let you know when I know myself, lol.

Thanks for your support!

Image result for a break from life
Image is a black and white meme with text that states "Just need a break from life" in white letters over a snowy background with leafless trees. Photo credit: Love this Pic dot com

#SorryNotSorry: You Can Keep Your Nonpology

I script a lot, mostly in my head. It calms me. And it helps me process. It seems that there has always been a phrase, a quote, a song lyric that helps to capture what's on my mind. People often fail me, but words seldom do. This one is easy. Comes from middle school lit class...Macbeth.

“Where we are, there's daggers in men's smiles.”

Few things are as deadly and vicious as people when they pretend. That fraudulent, dazzling smile masks a weapon; that olive branch camouflages a patch of poison ivy; those fluffy blankets are laced with smallpox. Just because someone says something doesn't make it real. Be vigilant - or you might find yourself asphyxiated by #alternativefacts you’d accepted as truth.

Sometimes it's very difficult, though - distinguishing fact from fiction. Sometimes reality seems relative and virtues seem variable. Sometimes the lines are blurry and you can't figure out what you should believe. Sometimes right seems wrong and wrong seems right and the rules are all different.

It reminds me of a conversation from not long ago. A friend of mine, someone I adore, asked several of us if we felt that we were more “Team Xavier or Team Magneto.” The responses, and people's justifications for why they were one, or the other, or neither, illustrated how sometimes it isn't a simple and obvious choice between “good guys” and “bad guys.” So-called “good guys” can be tremendously flawed, and so-called “villains” might have valid, perhaps even benevolent reasons for the decisions that they have made. It isn't as easy as left and right, up and down.

For those of you who don't understand the “Team X or Team Magneto” reference, my first thought is to feel sorry for you, but after doing so, I would encourage you to do a little research on the X-Men.

I have had a fascination with the X-Men comics (and later, the movies) for as long as I can recall, and not solely because I'm an 80’s baby. There was, and is, so much profundity in the concepts of the X-Men; it is so much more than just the saga of mutants living in a hostile human world. As a person with numerous identities and marginalizations (i.e. I am a person of color, a disabled person, a person from an immigrant family, a woman, etc), the X-Men has always resonated with me while simultaneously creating a sense of inner conflict.

I could never decide whether I agreed more with Professor X, the leader of the X-Men who wished to coexist peacefully with humans, or with his antagonist Magneto, a pro-mutant leader who dreamed of liberation and safety for his people. Both had positions that I could understand and relate to, and I had difficulty picking a “side” and sticking with it. (On a side note, it's important to point out, as some people shared in the aforementioned discussion about this topic, that there are a number of problematic characteristics of both Professor X and Magneto, including their tendencies to manipulate others, their lack of transparency, and their subjugation of women; I am not implying that either is an ideal role model nor the epitome of leadership.)

I’ve had a similar ambivalence when I’ve pondered other seemingly polarized perspectives, i.e. Martin Luther King, Jr. and Malcolm X or democracy and socialism. To me, even when I do have a clear preference, I typically acknowledge that there are often a few points on the “other side” that I find to be somewhat relevant.

Some people say that makes me “balanced.” “Reasonable.” “Open-minded.” “Level-headed.” “Neutral.” “Relatable.”

I, however, have a few other adjectives that I think depict how I perceive it:

“Double minded.” “Conflicted.” “Confused.” “Wishy-washy.” “Soft.” “Weak.” “Malleable.” “Overly sympathetic.”

I don't consider it a positive thing that there are aspects of the “other side” that I can understand or relate to. I am not thrilled that I tend to be thrust into the role of an ambassador rather than a warrior for the cause. For the love of all that I hold sacred, I sure as heck do not WANT to seem like someone that “they” can relate to or reason with. All that makes me wonder is what is wrong with me? What's defective about me that makes me the one? What is off about me, in comparison to others in my community, that “they” seem more inclined to be able to see/partially understand/listen to me?

Who are “they” you ask? “They” are anyone who makes me, or people like me an “other.” I didn't create the “us” and “them” distinctions; I just live in it. Depending upon the scenario, sometimes I fall in one “us” category and other times in another “they” category.

I didn't make these rules. Maybe life would be different if we could be accepted as “we” and “I” rather than the way it is, but that isn't my reality nor is it yours. This world we live in is, and has been, an “us” and “them” world where inequality is the status quo.

Tying this back to people and pretending, I recognize that the way I am makes me easy prey for the worst type of predator: the falsely redeemed one.

As a survivor, I have walls up...heck; I have drawbridges and moats and sentries; fire-breathing dragons. I learned very young that people aren't to be trusted. People lie. They steal. They cheat. They hurt you, and they hurt others. For every kind soul you encounter there are multiple soul-crushers. I don't trust, and I won't trust. I don't believe. I know for all the applause and all the praise and all the fickle attention, some people are waiting for me to fall so that they can trample me.

I'm not saying everyone. I know that I do have friends, colleagues, and supporters who are genuine and true. But I know that there are also people who are literally the opposite of that, though they feign otherwise.

For all my naïveté and inability to “get” things at times, I do have some discernment. I am not 100% clueless and helpless. I have a protective armor, and I can put together patterns. I am not defenseless. I am tough; I am strong...but I’m not invincible.

And too frequently my inner Angela Davis gives way to a humming, zen-like “Kumbaya” mode...reverting from Angela to Angie. Too often I am too willing to forgive and to cooperate. Too quickly, and too easily.

I don't fully understand the reasons why, but there is such a huge draw within me to want to believe people can be redeemed. That they can change. That they can evolve from something practically repulsive to something, and someone, who can be a true ally.

It isn't that this can never happen. It can happen...it does happen. However, what also can, and does happen is that people misrepresent themselves. They go through the motions of making a transformation when all the while there is no true inner change. They gain access, gain information, weaken their unsuspecting hosts, and become stronger and even more dangerous. Now they have not only the proximity, but now a heightened, more specialized ability, to wreak havoc, to maim, to destroy.

Every apology is not real, and every individual/position/stance should not merely be accepted at face value. If accepted without qualification or scrutiny, we put ourselves in an extremely vulnerable situation and place ourselves at risk. We cannot afford to do that. We must value ourselves enough to evaluate those who say they are with us and to have safeguards in place when, not if, we are compromised and/or betrayed.  Anyone and anything that is real will be able to withstand being tested/vetted and in fact will likely welcome it.

We require individuals to obtain licenses/credentials/permissions and/or training in order to operate vehicles/machinery, assume certain roles and responsibilities, to handle food, to go fishing, even to march on public lands. We don't just let them enter with a sheepish smile, hastily uttered apology, and a few murmured buzzwords claiming allegiance and solidarity.

“I’m sorry; I’ve changed” isn't a universal access key. You say you're sorry? You say you’ve changed? You're on “our” side now? For real for real?

Talk is cheap. Actions matter more. You say you’ve got my back, that you're here for me, for mine. For my people, for my cause. You say we're in this together.

Maybe we are, maybe we aren't. I’ll believe it when I see it.

Until then, I don't trust you, and you can keep your apology. I’ll accept it when I know it's real.

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Image of a silhouette of an individual holding a long-stemmed rose, but their shadow depicts that in actuality they are bearing a gun. Photo credit: Back Office Bulletin

Friday, March 24, 2017

Don't Be Like Me: A Letter to My Daughters

The best piece of advice I have for my daughters? Don't be like me.

Many people look up to their parents; even want to be like them. I'm your mother. I know you love me. You admire me. In some ways you are already somewhat like me. I know you aren't going to understand me. But please, please feel me - what I'm trying to tell you. No matter how much you think I’ve got it together, how much you think I’ve overcome, how much you think I’ve accomplished. Because I love you and want the best for you, right now I am begging you. Begging you - please don't be like me. Don't turn out like me. Don't be anything that remotely resembles me.

Being me means you will get hurt.
Being me means you will get used.
Being me means you will be discarded.
Being me means you will be disrespected.
Being me means you will be disregarded.

Being me is to never be certain of yourself. To never be at ease in known or unfamiliar surroundings. To always struggle to understand things. To trust when you shouldn't and not to fear when you should. It is complicated, it is draining, it is being too much of some things and not enough of others.

To be me means that even when someone harms you, lies to you, betrays you, you don't value yourself enough to leave.

It means that no amount of trappings of pseudo-middle class life can sufficiently cover the impoverishment that dwells within you.

It means that no matter how many prayers you whisper, no matter how many praise songs you utter, no matter how many hours you spend on your knees in that prayer closet you're never going to be clean enough. You're still that little girl who got ruined so many years ago, whose body is only good for bringing others pleasure (but you pain).

It means that when you look in the mirror you hate what you see...who you see. But yet it's the only person you recognize, the only one you know how to be.

It means fighting with your own mind incessantly. Is what you're producing good enough? Are you working hard enough? Are you giving enough? Are you doing enough? Are you being enough?

Are you even enough? Will you ever be enough?

I don't want your beautiful, unique spirit crushed. I don't want your joy depleted and your self-worth deleted. I don't want doubt, anxiety, sadness, regret to take residence in your heart. I want you to be happy. I want you to be you. I want you to be fulfilled. I want you to fly…

I want you to be free. And that is why you must never, never, never, never

Never end up like me.

Disability Justice is Social Justice; Lean In

Cue the lights, cue the music. The video starts. A young lady with Down Syndrome stands on a grassy football field, her eyes glistening with tears that threaten to roll down her carefully made-up face as she is crowned Homecoming Queen to a chorus of thunderous applause. The next few minutes of the video are clips of the girl’s nondisabled classmates describing how they all decided that they would nominate and vote for her so she could “feel good about herself,” and how “brave” they think she is while teachers and parents nod approvingly, beaming with pride and happiness.

You scroll through your social media feed. It’s another viral post about an autistic child who got hordes of birthday cards from well-meaning strangers because he doesn’t have any friends and his mother wanted him to feel like people care about him.

You’re walking out of your home. One of your neighbors is passing by and greets you. As you lock your door, you return their greeting. Your neighbor stops to make small talk and you compliment the sweater that they have on. “Thank you,” the neighbor says, “but isn’t is strange that it’s cold enough that I even need a sweater today? Yesterday I was wearing shorts. This weather is soooo bipolar.”

Your Netflix app sends out one of its periodic notifications. This one is a discount coupon coupled with recommendations for a few movies you might want to watch. One of those movies is “Me Before You,” a 2016 movie in which a man seeks to end his life as a result of becoming disabled and no longer being able to walk. It earned over $207 million worldwide (10 times its studio budget) and earned a People’s Choice Award for “Favorite Movie.”

You flip through the local paper. In the human interest section way in the back near the classified listings there are several public notices. One or more of them announce an intent to “terminate parental rights” of various individuals. What it doesn’t say is that those individuals, the parents who are losing custody rights to their children, are disabled. Nor does it reference the staggeringly high child removal rate disabled parents face, reportedly as high as 80% in some cases.

You’re at the playground. Other than the obligatory accessible parking spots, you don’t observe any efforts made to make the environment accessible. The ramps dead end at a sidewalk and don’t lead up to the swing set, slides, monkey bars, merry go round, or jungle gym/climbing area. The swings are the old kind, flat and horizontal, with no back support. The playground surface is uneven and covered with slippery pebbles. The merry go round is adorned with lights that flash on and off while it spins.

You’re watching the news. There is a financial analyst discussing how a certain policy will “cripple the economy.” Another panelist comments on saving habits of millennials, remarking that they are “too blinded by instant gratification” to save money at the same rate of previous generations. A third panelist retorts that the only reason Baby Boomers saved is due to being raised by parents who were still “paralyzed by fear at the horrors they survived during the Great Depression,” not because they were inherently more responsible than millennials.

This is but a tiny sample of the world we live in. It is a world designed by and for non-disabled individuals; a world where accessibility is perceived as extraneous, bothersome, costly, and usually an afterthought. It is a world where numerous individuals with disabilities STILL lack basic rights, autonomy, and access. It is a world that is better than it was, but still is extremely, unquestionably, excessively ableist.

Ableism is defined as discrimination/prejudice against individuals with disabilities. And it’s EVERYWHERE. It permeates practically every aspect of society from the individual level on up. Like the air we breathe, it isn’t easily apparent, but it is a constant presence. It impacts systems and structures as well as people. And it does not only impact disabled people; it impacts you too. You were raised in, and still live in, an ableist society; more likely than not you harbor some ableist views.

Most people don’t think they’re ableist - if they even know what “ableism” means. However, once they have an understanding of the term, most people bristle at the thought they could harbor any sense of bias against disability, and would go to great lengths to try to prove that. However, some things are just a fact of life. I’m writing to you today as a disabled woman asking you to lean in with me; to consider my words; to feel me. To try to.

I could back up and try to illustrate this a different way. What if I were referring to the concept of racism instead...including white privilege, white fragility, microaggressions, anti-blackness, anti-immigrant sentiments, and other terms that many of you are more comfortable with? Most of you possess or are developing a sense of consciousness about this issue and have grown in your capacity to better comprehend and better address these and other complex racial issues.

Or what if I was talking about homophobia, transphobia, Islamophobia, misogyny, classism? None of us doubt those things exist, and none of us would argue that we haven’t been affected in some manner by the greater societal view of them - whether we accepted it, rejected it, struggled to understand it, or whatever reaction. Ableism should be no different.

We need to acknowledge how pervasive ableism is; we need to work to educate ourselves and those around us; we need to be active and intentional about dismantling ableism; we need to respect, support, center, and amplify disabled people and causes that impact the disability community. We will never have an intersectional movement if disability and disabled people are not meaningfully included.

Here are a few ways that you can do that:

Those things will be a good start and will help you become a lot less ableist. But as this is a #calltoaction post, there is also some urgent civic action that you can help with, right now, with regard to disability:

1. Contact your lawmakers to OPPOSE H.R. 620, the ADA "Education and Reform Act," which would make it harder for people with disabilities to enforce their right to access public accommodations. You can sign a Change.org petition that was created for this purpose: https://www.change.org/p/dara-baldwin-don-t-tread-on-my-ada-oppose-ada-education-reform-act-of-2017-h-r-620

2. Contact your lawmakers to OPPOSE H.R. 1493: “To amend the Americans with Disabilities Act of 1990 to impose notice and a compliance opportunity to be provided before commencement of a private civil action.” This puts the onus on disabled people to have to formally notify entities who have violated their rights that further action will be taken.

3. Contact your lawmakers to OPPOSE H.R. 634, which would dismantle the entity that is supposed to make voting more accessible.

4. Contact your lawmakers to SUPPORT HR 897, which would fund peer-run programs by and for veterans seeking mental health support

  1. Educate your lawmakers about the disastrous impact that Medicaid per-capita caps will have on people with disabilities. If you need talking points, this fact sheet from The Arc might be helpful: http://www.thearc.org/document.doc?id=5609
  2. Educate your lawmakers on the importance of the Community First Choice section of the ACA, which the AHCA would repeal. Community First Choice programs give extra subsidies to states so that they can put community services in place for people with disabilities. This way they don't have to live in nursing homes and institutions.

Many thanks to the members of the Disabilty Intersectionality Group who assisted me in coming up with several of these ideas for things you can do to combat ableism.

Image is a disability justice meme with a red silhouette on the left of a figure who is a wheelchair user wearing a shirt with the accessibility symbol on it, one fist raised in the air. On the right is a drawing of a transparent head with a white brain, designed to represent neurological/psychiatric disabilities, etc. Next to it on the right is a stick figure in white using a cane or crutch/supportive device to walk. Below that figure to the right are a set of hands, also in white, that appear to be signing. A colorful half circle is in the center of the image and the background is blue. Photo credit: UC Davis