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 had 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 your don't see any new posts from mefor a while. I'll let you know when I know myself, lol.

Thanks for your support!

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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 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 petition that was created for this purpose:

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:
  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

Thursday, March 16, 2017

Not Your Nature, Your Choice: Abuse, Life, and the Scorpion and the Frog

Most people know the fable about the Scorpion and the Frog. In case you don’t, a scorpion coaxes a frog to carry him across the river since the frog can float and the scorpion cannot. The frog is skeptical at first, but the scorpion pleads convincingly, appealing to the frog’s sense of duty. The scorpion also points out that it would be unwise for the scorpion to sting the frog because if so, they’d both drown. The frog agrees.

Halfway through the trip, the frog is stung in the back by the scorpion, which causes instant paralysis. Incredulous at this betrayal and unable to swim, the frog asks the scorpion to explain why, as now they are both sinking into the water and will both die. The scorpion replies, “It’s in my nature.”

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Image is a colorful illustration of a scorpion stinging a frog in its back. Photo credit: gfather politics

It’s supposed to be a commentary on human nature and who we truly are; our innate characteristics. But it’s wrong.

I’ve been the gullible, trusting, frog. I’ve been persuaded to believe things that I should have known were untrue - because I wanted to believe in good. I’ve gone against my better judgement to assist someone else even though there would be little to no gain for me. I’ve looked at scorpions, grasping jaws and venomous stinger plainly visible, and convinced myself that I should believe them when they promised to do me no harm - even if I’d previously been stung.

I’ve piled what I don’t need upon my back and began to travel through long, treacherous waters. Not only did the other party not render any support or assistance, I was weighted down by trying to keep both myself AND them afloat. I’ve left my safe, comfortable habitat and plunged myself into the cold to fulfill someone else’s desires. Where they were headed I had no place being there. Shouldn't have gone; shouldn't have even considered going. But I agreed.

So the first part of the fable is accurate.

It’s the ending that I am rejecting. You see, if this is supposed to be a commentary on human nature, then that ending is all wrong. In actuality, it would go something more like this:

Halfway through the trip, the frog gets tired. She has, after all, swam half the length of the river unaided without stopping. She expresses her fatigue to the scorpion and asks if they can tread water to rest. Or if the scorpion would consider re-positioning himself to distribute the weight more evenly. Or if they could search for a piece of driftwood that the scorpion could float on for a little while - to make it easier.

In turn, the scorpion gaslights her and makes her feel inadequate and selfish for making her struggles and needs known. So the frog suppresses her thoughts and continues to maneuver through the water, silently enduring her internal pain. In this version the scorpion does NOT sting her in the back while they are midway through their trip. The frog makes it all the way to the other side.

 From this point, there are a multitude of endings. Perhaps now that the scorpion has gotten what he needed out of the frog he will sting her now because she has served her purpose.

Maybe he won’t sting her at all. Maybe he will open his jaws and poise his stinger like he’s going to do so, and when the frog cowers in fear he’s going to belittle her for her fear and tell her how stupid she is...he wasn’t really going to sting her and that maybe the reason she was scared is because she has a guilty conscience and thinks she deserves to be stung.

Maybe he’ll accuse her of having taken other scorpions across the river, and will say that she probably swam faster and without complaint for them, and that he doesn’t even know why he decided to let her take him at all because she’s a frog whore.

Maybe he will sting her, but not enough to kill her. Just enough to hurt; just enough to let her know that she’s not in control and that if he really wanted to he could take her out. But he has chosen to be merciful; she should be grateful and should stop pouting and being overdramatic.

Maybe once they get there she will explore the river bank and eventually stumble across another animal. She is wary at first, but he is kind to her. He gains her trust, and she is happy and at peace, forgetting all about the scorpion and enjoying her new life. But one day the scorpion appears out of nowhere and approaches her. Apologizes for how he acted in the middle of the river, complimenting her, telling her how much he misses and cares for her. Her memories on the other side of the river bank are distant, but she begins to reminisce, soften, and fall under the scorpion’s spell despite the fact that she should know better and has everything she needs. At the end of the day, she’s the same frog that he convinced so long ago. She is weak for him, and she is easy to manipulate - as she was in the past.

Maybe he will look around, declare that he absolutely HATES this side of the river, turn things around on the frog and tell her that it’s HER fault that they are there; he never wanted to come here; he only suggested it because it’s what SHE wanted; and that she ruins everything - at which point the frog will take the bait, plead for the scorpion’s forgiveness, and agree to make the exhausting return trip back where they started from.

Maybe he will walk along the bank of the river, find another frog, and begin to woo her; spewing lies about the “awful” frog who brought him here who was so problematic and unsupportive. That frog will of course believe him; he is a charismatic speaker with an air of innocence.

Maybe he will attempt to sting the frog and she will escape and run for cover. Then he will search for her and find her and tearfully ask her to forgive him. He never really wanted to sting her. He’s just a product of his environment; of his scorpion makeup; of his upbringing. He didn’t know any better; he had to sting everyone all of his life to survive, to protect himself. But he can change - he HAS changed; please trust him. She will believe every word and will return to him - only for him to sting the h3// out of her.

Any number of things can happen. But I’ll tell you what will NOT happen. The scorpion will never, never, never sting the frog in the middle of the river. Because in doing so he’d also die too. And oh, no. He will never let that happen - not ever. He’s not going to allow himself to be drowned; he loves himself too much for that. You see, the reason he will wait until he knows he is safe is because it’s NOT “his nature.” It’s his choice.

He is not a victim of circumstances nor a puppet in the game of life. He is a predator. Underestimate him at your own peril; he doesn’t play to lose. He is a survivor. He will enter through miniscule cracks; burrow himself in unconventional places; hide out in the cool darkness.

He is a master hunter - but he will seldom seek out his match, another scorpion. Why would he? You’re so much easier as prey. You barely require effort or thought, and you are easily defeated. And you won’t see him coming until it’s too late, and even when you do, you are easily fooled.

But all hope is not lost. A frog might not have the ability to sting and fight. But you do have those magnificent legs. You were born to leap - freely. Little frog, no scorpion defines who you are. It’s time for you to do what you were made to do. Leap - high. Soar. Far away from the sting; far away from the hurt; far away from the danger. You can be safe, and you can be free. And you deserve to be.

Believe in yourself. You can still leap no matter how many times he has stung you, because you’re still a frog. Maybe you can’t leap as high as you once could; maybe you can’t leap as far or as fast. But you can still leap. What happened to you, what you’ve been through, what you’ve seen, what you’ve felt, what you’ve done, what you should have done, what you shouldn’t have done - none of that changes the essence of who you are. No bad choices, no poor decisions, no hurt, no pain, no regrets, no shame can transform you into something other than who and what you are.

You are still you. You will always be you. You never lost you. She is still in are still in there. Tired, weary, sad, scared, weak. But there. Still there.

Just take that first leap, and the rest will come naturally. Safety awaits. Peace awaits...freedom awaits. He may continue to threaten to sting you, but you cannot let that fear keep you captive any longer. You need to get free.

Just take the leap.

Wednesday, March 1, 2017

Disabilty, Choice, & the Right to Exist, for #DDOM2017

I was asked to write a post about ableism in Pantsuit Nation to be shared with their members. I don't have the spoons to write a separate post for Disability Day of Mourning as well, so I am using the text of that post here.

(Edited to add: Pantsuit Nation has opted not to publish my post, which is their right. Glad I published it here.)

It's no secret that I have been openly critical of racism and ableism that I have both endured and observed in the Pantsuit Nation group. I have noticed attempts to stem this and to develop more of a sense of consciousness in the group in hopes of shaping its members into more engaged and intersectional allies for various groups, with variable progress. However, there is something that I have witnessed quite a bit lately, and I needed to say something about it.

There have been several posts that have been published on Pantsuit Nation by people stating that they wanted to share their stories of having chosen to have an abortion after learning that their child was going to have a number of severe disabilities. These posts received huge numbers of likes and comments.

I refrained from commenting on those posts, as it took tremendous courage for those women to speak out about something so personal and so painful. I wouldn't dream of causing these women more hurt nor denigrating them for their individual and legal choice to do what they felt was best for themselves and their families.

However, with every like, every “heart,” and every remark my soul died. You see, I am a disabled woman. And I am a mother of disabled children. Each and every one of my children has at least one disability. Two of them have life threatening disabilities. And the thought that according to literally thousands of people in this group that numbers ~3-4 million people across different continents death is preferable to being like me or being like my kids - disabled - creates a pain that I don't have the capacity to adequately describe in any spoken tongue.

I love my life despite its challenges, and I am grateful for the opportunity that I have to live it. And I LOVE my children. Love them with every organ, every nerve, every cell, every vacuole in me. I am glad they are alive. And I love them for who they are - with their disabilities, NOT “in spite” of them. I would not change them, would not give them up, would not trade them. I choose them.

It is hard for me to reconcile how someone can claim to be pro-choice and yet not be “pro” my choice to live a disabled life. If all humans have the right to bodily autonomy, that includes disabled people, and that includes, at the bare minimum, the right to exist.

This may seem like a miniscule matter, but it is not. Ableism is so deeply entrenched in our society that most people aren't even aware of it. It is simply part of the environment, like the air we breathe. How else can people boldly declare that “Black Lives Matter,” that we should “Protect Trans Kids,” that “Women's Rights Are Human Rights,” and that our Muslim and immigrant brothers, sisters, and friends are “Here to Stay,” and yet have no qualms thinking a disabled person is better off dead than alive? (Not even getting into the fact that disabled people can encompass any of the above groups as well.)

It is ableism that allows movies like “Me Before You,” to become huge hits. It is ableism that allows a judge to give someone a slap on the wrist after sodomizing a disabled black male with a coat hanger. It is ableism that allows people to applaud an abortion of a child a person would have otherwise wanted if not for the fact that they later discovered the child to be disabled. It is ableism that allows caregivers to murder their disabled children, spouses, etc every year and receive sympathy for doing so because the task of having a disabled relative is apparently such a burden that it is somehow conceivable that someone would “snap” and murder them.

In the past five years, approximately four hundred disabled people have been murdered by their relatives and caregivers - one hundred of those in the past year alone (ASAN). Today, in fact, is the annual Disability Day of Mourning. The disability community sets aside this day to mourn those who were killed by caregivers for the “crime” of being disabled. And while these numbers might seems shocking to you, they aren't to me. If a disabled fetus is apparently so problematic, wouldn't a disabled infant, child, teen, adult be perceived as even more so?

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Image of the lengthy list of names of disabled people murdered by caregivers over the last few years. Photo credit: Leah Kelley

I implore you to do some self-examination today. Look deeply into yourself. Think deeply about this. What ableism are you harboring? How are you contributing to the problem? You don't have to starve a disabled child to death, or beat them to death, or run your elderly disabled relative over with your car to be complicit in this. There are many seemingly insignificant, insidious ways that people foster a culture of ableism that allows for these types of things to take place, from small micro aggressions to large actions.

There are also ways to work on combating the ableism within yourself and within the community. In the language we use; in the policies we support; in the way we live our lives. Conservatives call a lot of us “snowflakes.” Enough snowflakes can create an avalanche of change. Or, to use a proverb from my continent of origin, Africa, “When spiderwebs unite, they can tie up a lion.”

You are no use to me with your #BlackLivesMatter shirt and your “I’ll Go With You” pin if you aren't willing to assert that disabled lives matter too. My Black disabled life; my kids’ black disabled lives; and the millions of people around the world with disabilities too.

If this gets through to even one of you, I’m grateful. But right now I am going to devote the rest of my attention today to honoring the lives of our dead for today's #DisabilityDayofMourning, or #DDOM2017 if you care to look it up on social media. Because they mattered, and we need to #SayTheirNames.

Morénike Giwa Onaiwu

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Image is an illustration of three lit candles with text that states: "Disability Day of Mourning: remembering people with disabilities murdered by their families." Photo credit: disability - memorial