Dear Ashley: On Your Birthday

Dear Ashley,

Not a birthday goes by that I don’t remember the day you were born. You were then, and are now, a blessing.

It was pure ignorance for any doctor to predict your entire life within 45 minutes of your birth. What absolute arrogance. As a new mother? I was without words. All these decades later? You bet your mom would set him straight and put him on his heels. Your birth was to be celebrated that day and every day since.

We have had thirty-seven hard years of proving the professionals wrong, Ashley:

To the pediatric cardiologist who referred to you as part of a “bad track record,” he was an ass. You were a beautiful child and a member of our loving family. How dare he!

To the geneticist who said you would never graduate from high school, he was dead wrong. You did!

To the speech language pathologist who said you didn’t have the “intelligence” for verbal communication, you showed her and all the doubters that your intelligence is not measured by the number of words you can utter.

To the neuropsychologist who said my efforts in advocacy and microtechnology gave your life purpose, she was wrong. Your life had purpose long before and completely independent of my efforts.

To the educational “experts” who would have preferred to segregate you and provide life skills rather than a traditional education with your peers, you proved them backward and their thinking archaic.

To the people at vocational rehabilitative services who didn’t want to be bothered with achieving employment for you, you showed them by paying employment taxes from your job of nearly a decade.

To the attorneys who uttered countless stereotypes, wanting to believe you were incredibly broken and disabled before your stroke, and not wanting to believe the simple fact that you can read, that video from 9th grade will set them straight. You will educate yet another handful of ignorant “professionals.”

You have been a gift and an inspiration to many. Without a doubt, life would have been so much easier, and so much less of a fight, if everyone had only recognized that. But it was never you, sweet girl. In my eyes, you are still as perfect as the day you were born.

Love,
Mom

Brass Knuckles, an Actuarial Table, and a Social Construct

I’ve never wholly embraced the idea that I would live into my nineties, or even my eighties like the majority of my ancestors. I’m optimistic by nature, overcoming great struggles for the benefit of others. But for myself? I am more a realist and recognize I am not long on luck.

Until recently, my health had been relatively solid, a fact that I was rather proud of. To healthcare professionals, I often referred to myself as “medically boring.” And I was always promptly reminded, “That’s a good thing!”

With each birthday, I have done the math based on “best case scenario,” calculating how long I have lived and how much time I might have left. In a sense, I have served as my own actuary. I’d always been hopeful for a long life but also well-aware that a future was not guaranteed, even with genetically-enhanced longevity.

I’d read articles about stress and its effects on health, specifically chronic stress and “caregivers syndrome,” and recognized my health was likely compromised. “Burning the candle at both ends” would be an understatement. It was more like both ends and smack dab in the middle.

Unlike blood pressure measured in millimeters of mercury, or a glucometer to measure sugar levels, there is no “stress-o-meter” to give an accurate measurement of daily travails. Oh, sure, the stress hormone cortisol can be measured, but that’s a transient value and doesn’t represent the wear and tear on the body. Now with an available over-the-counter kit to determine the remaining length of my telomeres, I say “pass,” politely of course. There is no “anti-stress” pill to address or repair them, and a significant lifestyle change is not in the offing, so why bother?

I’ve been hopeful that the demands on my life might ease up to the point that I would still have the opportunity to do some of the things I have dreamed of: travel, write, read, take a pottery class, even spontaneously decide to walk the dog, all with a much-needed, and long overdue, touch of frivolity.

But my life has been filled with a unique charge. Caregiving for a daughter with multiple disabilities is now into its fourth decade. And, yes, it is very demanding. Having raised three daughters in all, I can recognize that there are exceptional and unusual challenges. But there is also a lovely “sameness” to it, a matter of parenting one more of my amazing children.

I, more often than not, hesitate to share much about the struggles for fear of being misunderstood. If you’re a member of the club, you already know the secret handshake, simply by virtue of the fact that you are a parent of a child with disabilities or chronic illness. But for the rest of you? You don’t understand. Trust me. You can’t.

To be honest, to offer a mention of a “fourth decade” even feels risky for fear of being misunderstood. Could it be misconstrued that I somehow have not wanted to make that milestone and the ones to follow? If that’s the conclusion jumped to, one would be horribly mistaken. For there not to be a “fourth decade,” my daughter would have predeceased me. No parent can bear that. No parent.

But am I worried that she might outlive me? You bet I am, every day of my life, for more reasons than non-club members could fathom.

Equally risky and exhausting, there is also a downside to not being forthright. Desperate for our lives to look like what others call “normal,” we labor to make it look easy, slapping smiles on our faces, knowing full well that being candid would likely drive the few remaining folks away.

But it has never been a pity party at my house either. I’ve been too busy grubbing to create a path for change. My life not complicated enough, I predictably morphed into a disability rights advocate. (But then aren’t most parents of kids with disabilities “disability rights advocates” in one form or another?) We identify with the soccer mom, except on steroids, donning a cape, and wearing brass knuckles and too often the same clothes we wore the day before.

It hasn’t been easy. I’ve not only fought my own battles but often everybody else’s, too. It is not something I look back on fondly. While proud of what I was able to accomplish (and accepting of the fact that I would be compelled to do it again), I now recognize the cost was likely way too high.

In the special education arena alone, I was fighting serious stuff from educational segregation and discrimination to accessibility, issues that few know about and most take for granted. I toiled away, evidence organized in tidy piles lining the walls of the master bedroom. All too familiar with the discriminatory structure that society created, I teased out strategies to overcome it: access to the school building, access to the classroom, access to the curriculum, access to technology, access to an education, access even to the playground. There were multi-year battles, lawsuits, investigations. This was my “normal” few even knew about but many benefitted from.

This didn’t stem from some twisted need of mine to be needed or, like a Chinese acrobat, to impress others by the number of plates I could simultaneously spin. No, I recognized that others were in pain over the mistreatment of their children – the children who could not speak or advocate for themselves – and I could absolutely relate because I was suffering and in pain, too.

In part, maybe I was hopeful I could collect a group of likeminded individuals who would fight along with me, create an army of advocates of sorts. Wrong. I only got pushed to the front. And when I looked back? Rather than being shoulder-to-shoulder or back-to-back with anyone, they were gone, but for a choice few (and I do mean few). Instead, I was surrounded by a multitude of “benefactors,” along with a slew of disinterested and apathetic individuals.

Maybe I just wanted a piece of what others around me had, those without a child with “special needs”: a sense of community, a sense of belonging to a bigger group called “society” rather than one identified by acronyms for a diagnosis or disability: DS, CP, VI, ASD, DD, ADD/ADHD, ED.

It seemed so simple, so just.

But “simplicity” wasn’t simple. And justice was a mirage.

Over many years of wear and tear, I began to feel the very fabric of my being deteriorating, thread after thread individually yanked, leaving weak spots and, in some instances, holes. My reserve was waning, and I knew it. But the demands were unrelenting.

With very little left for myself, I finally recognized that I wasn’t living my “authentic life.” “Systems advocacy” – replicable change – was digging furiously in sand: Turn your back in one direction only for it to collapse in another. It was stifling and I was slowly being suffocated.

Creating, something, anything, was the only thing that sustained me: authoring a book, writing an article, designing software or specialized fonts, preparing a workshop or presentation. Solving problems. Designing solutions. That is what kept me going.

But there came a tragic point when circumstances made even that all but impossible. As if a bystander of my own life, I watched as the riptide washed me out to sea. And, this time, I could not find my way back.

It was the toxic exposure at the high school that did it, that made one daughter deathly ill and left another with a chronic illness. Then there was the seven-year-long lawsuit that followed, my brain serving as a virtual Rolodex of information maintaining the story and the evidence. Two trips to Washington, DC came next, first to speak, second to participate in trying to effect change. But that was another one of those awful “digging in sand” experiences.

And then our oldest daughter had a stroke on September 8, 2017. It was not just a run-of-the-mill stroke but a devastating one, the paralysis/feeding tube/wheelchair/inpatient rehab kind of stroke. I had been down a similar path with her almost thirty years before. And here we were again, facing a horrible, gut-wrenching ordeal with a likely challenged outcome.

I was tested as even minimally adequate medical care was not provided for “my community,” the “diagnosed,” the “acronyms.” I was smart enough and, after all these years, well-seasoned enough to know to immediately request her medical record. I knew what I was looking for: It would be similar to what had previously lined the master bedroom walls, decades earlier.

And there it was. It wasn’t just a “feeling” of ableism or discrimination. It was there, in her chart in black and white. And, as a result, the medical community had nearly killed her…again.

It was completely and utterly devastating, trust-shattering for the umpteenth time.

And then one night, a few months later, I went to bed with an excruciating, unrelenting headache. Nauseated and in pain, I stayed in bed the entire next day. Knowing I could not remain bedridden, I finally got up, pushing through an entire week without medical attention or a diagnosis, all the while living with a subdural hematoma, a dangerous bleed on my brain.

The one thing I recognized was that the pain was extraordinary. What I did not recognize was that the inability to respond to my own pain might kill me.

It scares me to think what I endured, that it was necessary for me to be superhuman: Soccer mom on steroids, donning the cape and brass knuckles with a trash can by her bedside.

It still scares me.

Now I was facing brain surgery, recognizing the possibility of potentially catastrophic complications, simultaneously coming to terms with the fact that the actuarial table with my name on it may have finally run out.

I was staring down my own mortality.

But I had trained myself well. Alert and in intensive care, I appeared calm and resolute. I’m told I made it look “okay,” easy, just as I felt it necessary for all these years with my daughter, protecting everyone but myself.

There is no explanation for why I had a brain bleed. No trauma. No risk factors. Nothing. That scares me, too. Without recognizing and identifying a cause, how can I create a different outcome?

Or was there an explanation? Could sustained or acute stress, a spike in blood pressure, have been the culprit? The truth is, I don’t know, but that possibility has been neither ruled out nor discounted.

On the first brain MRI, an older spot “lit up” on the other hemisphere. That spot has remained unchanged on a more recent MRI and is thought to have also been caused by a brain bleed.

I now remember that headache, that excruciating thunder clap headache, following my presentation in Washington, DC. I remember the moment when the executive director of a national nursing association walked up to speak with me the day after my presentation. She was the only person to ask, “How are your girls now?” Overwhelmed that someone cared, I answered, “Not well.” That was the moment. I remember grabbing the top of my head while talking with her, questioning whether I should walk away to dial 911. But I remained composed and didn’t ask for help then either.

Now with the subdural hematoma and subsequent craniotomy, I ran all the years through my mind as I thought I might die: what I had stood for, what I had fought for, and what I had endured. I couldn’t help but think of what I could have done with my life under different circumstances and the things I could have become.

But those missed opportunities were not due to the circumstance of my child’s disability. No, I finally got it. They were due to the disability of our society.

I have always struggled to understand why society has unnecessarily made our existence so difficult, deliberately constructing walls that I and others have had to climb over and, in some instances, tear down. Politicians and the public can pat themselves on the back, passing sham laws deliberately designed with no intent for legitimate and sustained enforcement. Or in the case of toxins in schools, they pass no laws at all.

Like I said before, justice was a mirage.

But it didn’t matter anymore as I was fighting for my life. And I still am. I have finally accepted the fact that I am not immortal, that the cape and the brass knuckles must come off or my daughter will most assuredly outlive me.

And, after all these years, I know one thing with absolute certainty: In my absence, our disabled society will neither properly care for nor assure my child’s safety.

That is sobering.

Am I convinced that this social construct is not by oversight but by design? You bet I am.

I wish I understood why we actively and passively participate in a society, all of us, that screams “right to birth” and yet ignores “right to life”: my daughter’s, mine, my family’s, and countless others.

To my dying breath, I will not understand. I can’t. I won’t.

Can you?

Gold, Shakespeare, and Civil Rights

I realize more and more as I age, and especially during these trying political times, how much we are each a product of our individual life experiences. The simple things, like the neighborhoods we grew up in, the schools we attended, the cities we’ve inhabited or traveled to, and the religious beliefs we have been exposed to, surely must have a lasting effect on our personal values.

Opportunity has affected each of us as well, whether benefiting by sheer luck, circumstance, hard work, or, more than likely, a blend of each.

And then there are those more complex life events that are not of our doing. Whether we’ve experienced food insecurity. Whether we’ve been victimized by bullies. Whether we’ve lost a friend or family member to gun violence, a drunk driver, suicide, or medical malpractice. Whether we manage chronic health issues or disability. Whether we have been sexually harassed or sexually assaulted. Whether we have endured infidelity in our marriage, or been abused, neglected, or abandoned.

Or whether we have experienced unexpected and random acts of kindness. Whether we have benefited from unconditional love or a committed relationship. Whether we have lived in a loving home with compassionate parents. Or whether we have been blessed with good health.

It’s as if shiny pieces of gold are passing in and out of a coin purse called “life,” making each of us feel “rich” or “poor.” Angry or content. Compassionate or malevolent. Emotional or dispassionate. Integrated or isolated. Included or excluded. Generous or stingy. Empathetic or indifferent.

In our time of social media, we are offered an often unsettling peek behind the curtain, a bit like a train wreck: unpleasant to look at but oddly difficult to turn away from. Seeing friends and strangers, in a sense, naked. Overtly uncaring, biting, intolerant, racist, name calling. Casually throwing around generalizations and stereotypes that can cut another like a knife.

For some, the experience can be nauseating, anxiety provoking, and enormously depressing.

But for others, fanning the flames appears invigorating, a life force, “justified.”

For me personally, it is unsettling, potentially revealing a disturbing synthesis of life experiences.

Or is it that the life experiences of others have, through no fault of their own, been “lacking?”

It causes me to reflect on periods of my own life as a victim of discrimination, segregation, and abuse of power. And I wonder how much that has shaped me. I wonder whether others have been touched by these same things, or whether they are living in an alternate reality of sorts, a safe bubble, unable to understand the disturbing sense of vulnerability experienced by others.

I wish I knew.

But I have had many life-changing experiences that have deeply affected me. A more civilized form of jungle warfare, it has no doubt altered my thinking and undermined my trust of others, and of protections afforded some by our society.

I have a vague recollection of how I felt a few decades ago, before so many disturbing events landed in my life. I recall feeling calmer, safer, more self-assured.

But my child’s civil rights, and therefore mine, have been threatened on multiple occasions, over decades. It has changed me.

Your child’s civil rights have likely never been at risk.

Your child has likely never been told they cannot attend their neighborhood school two streets from home. Rather, they needed to be bussed to a different school miles away. Mine has.

You have likely never been concerned about your child’s access to something as simple as a public school playground, a medical building, a restroom, or the opportunity to participate in a school holiday program. I have.

You have likely never been subpoenaed, multiple times, while trying to stop segregation and discrimination, or health-harming practices, for your child and others in a public school district. I have.

You have likely never had altered documents used by your child’s public school to deny them an education. I have.

You have likely never had to “afford” tens of thousands of dollars in legal fees to defend the rights that others take for granted. I have.

You have likely never been the prevailing party in a court case appealed to a state’s supreme court in an effort by your public school district to wear down, intimidate, and empty your pockets. I have.

You have likely never had an agency of the government suggest institutionalizing your child. I have.

Maybe you have never seen this level of deceit and corruption? Malevolence? Disregard for the life of another? I have.

“You are an alchemist; make gold of that.”

I have. But it has been at a price.

I am white. I am an American citizen.

So is my child.

But my child is disabled. My life experiences tell me that shouldn’t matter. Nor does skin color, nor age, nor religious affiliation, nor sexual orientation.

It must be that alternate reality that some live in. I have no other explanation.

“I am not what I am,” some would proclaim. Or are you?

We all need to frequently peer into our life’s purse to be sure it is gold that we have mined, rather than fool’s gold, an essentially worthless mineral.

“Foul cankering rust the hidden treasure frets, but gold that’s put to use more gold begets.”

Beware of “shiny objects.” Appearances can be deceiving.

“All that glitters is not gold.”

One Year: My Opinion Stands

I wrote this just after the election and, for a myriad of reasons, I never shared it. I also marched a year ago, but this year I could not attend. Maybe sharing this now is my way of protesting in absentia.

For me, this has been an enormously painful year, enduring the persistent assault on values I have worked hard for and hold dear, from education to the environment. Personally, this administration cannot end soon enough.

Dear Mr. Huckabee: A Nation of Dissonance Rather than Harmony

A day after the election, Republican politician Mike Huckabee wrote, “The sun somehow seems to be shining more brightly and the birds singing more sweetly. Or perhaps it just seems that way to me.”

Yes, sir. It’s you, Mr. Huckabee. Your remarks, and similar remarks by others since the end of the election, are offensive to many. This is not because he won and she did not, but rather that your words attempt to dismiss, or diminish, the issues related to the presidency and ones that continue to divide this nation.

Some of us have firsthand experience and, therefore, the ability to identify malignant narcissism. Understand that you may not recognize the oft- missed signs, and how narcissists desperately need their “tank filled” with adoration and praise. You may not recognize how they fly off the handle whenever their thin gold veneer has been pulled back, concealing significant character defects. When his “tank is running dry,” he must “fill up” at the expense of others to appear “brilliant,” “the smartest,” “the best.” Accept that you may not be able to smell danger like those who have lived it. We recognize master “shape-shifters,” projectionists, and individuals who are void of empathy. You perceive “strength” and “confidence,” while we observe narcissistic rage and narcissistic supply. Respect the fact that some of us know how it can lead to instability, abuse, and worse.

Respect the fact that some of us have firsthand experience with institutional discrimination. While some are “tone deaf” to it, others perceive discrimination through pitch disturbances and nuanced noise. While you may only hear unpleasant sounds that elicit claims of “racism,” “bigotry,” “homophobia,” and “xenophobia,” others hear frequencies that you either select not to hear, have been trained not to hear, or that you simply cannot perceive. For those subjected to discrimination, it sounds like the series of clicks as the hammer of the gun is readied. Squeezing the trigger is nearly imperceptible, then the hammer of the gun snaps and the explosion is deafening.

Respect the fact that some of us were the objects of unrelenting bullying. The bully was the one who fed off the putdowns and name calling of others, often using the slick guise of humor, emboldening their fellow tormentors while gleefully watching their victims contract. You may have never been bullied or choose not to recognize bullying because it makes you uncomfortable. Or perhaps you are the bully and do not identify it as a problem.

Respect the fact that some of us have firsthand experience with sexual assault and/or sexual harassment. Words can serve as triggers, as memories of assaults resurface, years or even decades later.

Many believe we have elected a man who is a malignant narcissist, racist, bully, and misogynist all rolled into one. Some of us have banked our experiences over a lifetime and go to great lengths to avoid any one of these loathsome types.

Now that he’s been elected, we are told to “get over it.” “Give this guy a chance.” I didn’t vote for him, but I hope for the sake of my country, and for the sake of my family, that he is not what many of us fear.

We can both agree that the intensity of sound is measured in decibels. But neither of us can perceive what the other hears. In my estimation, this election has proven that the nation is a chorus of tone-deaf individuals incapable of recognizing that they are even tone deaf. Sure, everyone has a right to sing, but that does not diminish the discomfort for those who possess relative pitch.

This nation is one massive chorus, and we must overcome dissonance so that you, and others like you, are not the only ones who are hearing “the birds singing more sweetly.”

CAUTION. You Are Now Entering the Hospital.

To be perfectly blunt, hospitals can be scary, scary places, where mistakes can be made that cause patients to become sicker, prolong their stay, and increase their medical bills. And at worst? Hospitals can kill.

My daughter’s most recent hospitalization has been no exception.  And I’ve found myself a hair-trigger from a primal scream more times than I want to admit. But the tears and primal scream will have to wait for another day. Now is the time to walk that thin, fragile line between advocating for appropriate care and holding folks accountable. And while I have a lot of experience at this thing called “advocacy,” I am capable of losing my balance (and my cool).

Just one department – respiratory therapy – has been enough to absolutely take my breath away. (Yep, that was deliberate. A piece of advice during a crisis: Do your best to find and maintain a sense of humor.) Having had multiple respiratory therapists treating her, one could be lead to believe there is a direct correlation between prolonged exposure to bronchodilators and diminished bedside manner. There is clearly something up with a number of these folks.

And inhalation of steroids may have somehow rendered respiratory therapists completely incapable of performing chest physiotherapy treatment (CPT), a technique to clear a patient’s lungs. Whether performed mechanically or physically, I have heard more excuses for all the reasons they cannot do it. 

Not withstanding the benefit to the patient – partially paralyzed from a stroke, bedridden, and battling early pneumonia – I heard excuse after excuse. “It causes carpal tunnel” (And so can keyboarding, but it is an expectation of the job and not the least bit of concern to the patient.) “I walked a half mile each way and couldn’t find a percussor.” (And I’m sure it was all uphill.) “Percussors walk out of the hospital.” (Those pesky percussors are not only capable of growing legs but are to be blamed for inadequate equipment inventory. Who knew?) “Percussors end up in isolation rooms and we can’t find them.” (There they go again, now playing hide and seek.) “95% of patients can use a flutter valve.” (I asked about the other 5% that includes my daughter with disabilities. Guess it’s SOL for her and patients like her who can’t use one.) “I didn’t see it on her chart so I can’t perform it.” “The doctor didn’t order it.” (Wrong and wrong.)

I was told by one respiratory therapist, “For patients like this (ohhh, bring it on, baby), I rely on the family to tell me what they need.” Uh, SHE NEEDS CPT! “Oh, I can’t do that. I have a shoulder injury.” So, who did her manual CPT? Me, of course, while the respiratory therapist watched. (He said I performed it well. Thanks. And I guess we’ll be getting a hospital discount? A “participation trophy” at discharge would be a nice touch.)

And that was after the respiratory therapist handed my daughter the breathing treatment, stepped to the end of her bed, and began watching the Rachel Maddow Show. Unsolicited, he began sharing his conservative political views about Puerto Rico. (Did I look “conservative”? Or the least bit curious about his political views?) I’ll be watching for an additional hospital discount for inattentiveness, or for being forced to listen to his lack of compassion during a humanitarian crisis. 

Never mind one respiratory therapist telling me that “it’s lucky that patients like her don’t know what’s going on.” Not only was he wrong that he should not be bothered with performing CPT, but he was also wrong that she doesn’t understand. Upping the ante in offensive remarks, I was told that in his day, “Patients like her were sent to the Hospital for the Incurables.” Are you kidding me? Did he just say what I think he said to the mother of a human being he is calling an “incurable”? His disability may be learned rather than congenital, but he has acquired a raging case of ableism!

One respiratory therapist must have thought I was the equivalent of a hospital priest and my daughter’s room a confessional. “This might be illegal but I “stack patients” by putting masks on multiple patients at the same time who are on the same floor.” He’s lucky we’re not paid actresses playing mother and daughter investigating Medicare fraud, or a hospital equivalent of a Secret Shopper. I hope his soul now feels at peace for getting that off his chest while my stomach has just been turned.

This is just one department. And it’s only a fraction of this entire experience. Unfortunately, it’s much bigger than this. It’s not just about the poor performance of a single department. It is about trust. It is about the patient (and their caregivers) being heard. It is about trusting that the national standard of care is met. It is about trusting that a patient’s health can and will be protected by a medical institution. 

And that this is happening in the presence of caregivers and families, and a physician’s family to boot? I dread to think what else is going on for which the public is completely unaware. 

Yes, indeed. Hospitals are scary, scary places. Stay alert, folks. Your life and health depend on it.

Thank you, Ann Coulter?

Dear Ann Coulter:

In your new book, In Trump We Trust, you’ve cleared up that pesky misperception that Donald Trump was mocking Serge Kovaleski, the New York Times reporter with a congenital condition called arthrogryposis. Here, this whole time, many of us thought Mr. Trump was using those exaggerated movements and exaggerated voice to deride Mr. Kovaleski for his disability and, specifically, joint contractures. I am so relieved that it was just Mr. Trump ONLY doing his “standard retard.” What a relief! I, personally, would never use that kind of malicious language toward Mr. Trump or anyone else. But I know Mr. Trump does not hold himself to political correctness so he would not be bothered to know that you, along with many, many other people…many…also see Mr. Trump in that way…because I wouldn’t use that word…but you did.

You were able to confirm that, indeed, Mr. Trump was “waving his arms and sounding stupid.” I would never say that Mr. Trump sounds stupid, especially when he waves his arms. But many, many…many…people say that. I would only say that other people say that. Many.

Again, thank you, Ms. Coulter, for clearing up this matter. I am not going to say that you are a despicable human being. There are many people who would say that about you but I’m not going to say that. I refuse to call you a despicable human being. If I did, that’s not nice. I didn’t say that. And I promised myself I wouldn’t say that.

And if you decide to clear up that you are not a gift to humanity then, by all means, please clear it up the same way you cleared up Mr. Trump “waving his arms and sounding stupid.”

Signed,

The Mother of a Daughter With Multiple Disabilities Who Is Relieved to Hear That Mr. Trump May Finally Have A Diagnosis, Albeit Offensive and Politically Incorrect. But I Didn’t Say That. Did I?

A Mother’s Lament: Leslie Jones, Donald Trump, and Hate Speech

Last night I posted a sweet video on Facebook. It was of Ashley signing, laughing, communicating, and being her wonderful self. I thought it was touching. And I thought it might allow others to experience just how amazing she is, disabilities and all.

But this afternoon, my better judgment kicked in, and I deleted it.

I had just read today’s article about the dehumanizing hacking of Leslie Jones’s website. And I remember the awful things that were said about her previously on Twitter. She insightfully defended herself when she was the guest, and I was in the audience, of the live taping of Late Night with Seth Meyers: “Hey. Hate speech and freedom of speech: Two different things.”

I’ve also seen similar racist, disgusting, and offensive remarks on Facebook about President Obama, his wife, and their daughters by individuals I am sure would swear they are not racist.

And then I remembered Donald Trump on national television mocking an individual with disabilities. That did it. “Delete.”

The video of Ashley was just the sort of thing that some “troll” could have made fun of. Thanks to Donald Trump, my sense of opportunity and acceptance for Ashley felt tenuous the moment he mocked the New York Times reporter.

No, you wouldn’t understand.

Oh, sure, I am very aware it has happened discreetly behind our backs for years. And I can share painful stories when it has been far from discreet. Dementia will be the only thing that will erase those memories. And Donald Trump’s mockery will take the same to forget.

Indeed, there is something about this time in our history that feels different to me and makes me take pause. In case you missed it in late July, 19 individuals with disabilities were stabbed to death and another 26 were injured in a residential care home in Japan. The murderer told the police, “It is better that disabled people disappear.”

The murderer had previously written:

I envision a world where a person with multiple disabilities can be euthanised, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.

I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery. I think now is the time to carry out a revolution and to make the inevitable but tough decision for the sake of all mankind. Let Japan take the first big step.

You likely never heard about this mass murder; it barely made the mainstream news. Maybe the media is indifferent to the slaughter of individuals with disabilities? Or maybe violence perpetrated with guns and knives has just become all too familiar.

But there is also an indifference to another kind of violence, a kind of modern-day, insidious “lynching.” Violence of words can be experienced in today’s climate of cyberbullying on social media, or the inflammatory rhetoric that is spewing from some political figures, or exhibited on your “newscast”-du-jour.

For me, the painful takeaway is that society is not ready to accept diversity and differences among us. Not even close. And I choose not to set up my daughter for potential ridicule and mockery without the ability for me to defend her since she is unable to defend herself.

So, if you didn’t see the video before I deleted it, you missed out. Albeit just a snippet, it was adorable. And it might have helped others understand what it is like to be uniquely Ashley.

But these are scary times of violence, hate, and indifference.

And today, I hit “Delete.”

Today, I don’t care if you ever “get it.”

Embracing the Idealist

It’s been just over two weeks since returning home from a writer’s retreat at the Mabel Dodge Luhan Lodge in Taos, New Mexico. What an amazing seven days: powerful women writers with stories to tell, supporting one another in their journey to find their truth. Jennifer Louden’s inspiring leadership. A beautiful setting. And exquisite food that included scrumptuous bacon each morning and a vegetable tofu lasagna that even made tofu taste delicious! (Before Taos, I honestly never imagined “delicious” and “tofu” in the same sentence. Indeed, the Sangre de Cristo Mountains are magical!)

I came home completely enthused and rejuvenated. I started off my week at home by preparing a batch of gluten free homemade blueberry muffins in honor of our last Taos breakfast, brewed a strong cup of coffee, and settled in for some challenging reading. It was my 3-hour deposition from almost exactly twenty-five years ago to the day that was the result of taking on our school district over rampant segregation and discrimination. The deposition hadn’t seen the light of day in over two decades.

I waded through page after page of the deposition. Multiple times I had to put it down and walk away. Remembering that “thirty-something” idealist, and all the personal sacrifices made, was just too much. The attorney tried his best to give me quite a beating. I hadn’t forgotten. He was an asshole. I was a warrior.

Then I began to feel my week slip away. The reality of all that is required of me in my day-to-day life with Ashley’s 24/7 care took over. A few sleep-disturbed nights made the day following all the more challenging, and I struggled just to get through, much less write.

But I kept writing in my head, even when I didn’t feel strong enough, or focused enough, to commit my words to a text document. I began to recognize a potential structure in my approach. And I was reminded of the concept of “conditions of enoughness” that was so eloquently explained, and a point that was driven home, by Jen during the retreat. All those strong, wonderful women begin to identify their “conditions of enoughness.” Now it was my turn to define mine, not just at a retreat but in the context of the complexities of my life.

Two weeks later, I made it through to the end of the deposition. Dozens of colored tabs cover the one hundred and twenty pages. And I’m now ready to dig out the Letter of Findings from the federal investigation that has also not seen the light of day in decades.

Today, I believe I can begin to share my truth. I can be hopeful. I can recognize the “thirty-something” idealist that still resides within me. I can start a new week. For now, that’s enough.

Duh. It’s a Civil Right!

Last night, I saw a Facebook post to the group of our local Down syndrome association. The post was “Interesting study!” with a link to an article out of the University of Kansas, one of the preeminent special education programs in the country. The article is titled, “It’s time to end segregation of special education students, professors say…” and discusses recently published research titled “Stars in Alignment,” in the journal of Research and Practice for Persons with Severe Disabilities (a publication of TASH).

Lovely thought, wouldn’t you say? Except Dr. Wayne Sailor, one of the professors at the University of Kansas who co-authored this research, published this same idea “to end segregation of special education students” in the book The Comprehensive Local School: Regular Education for All Students with Disabilities (Paul H. Brookes Publishing, 1989) when he was at San Francisco State University. That’s over a quarter of a century ago! The reason I recognized it? Because that book was my “Bible” of sorts that inspired me to spend a large part of my adult life fighting public education (and prevailing) over segregation and discrimination of special education students.

In the foreword of his book published in 1989, Madeleine C. Will, former Assistant Secretary for the Office of Special Education and Rehabilitative Services (OSERS) of the United States Department of Education, well-known national advocate, and parent of a son with Down syndrome, writes:

The provision of the law calling for maximum integration is based on a recognition that separating children with disabilities from their peers, when not required for educational reasons, can impair the quality of the education they receive. Segregation often leads to the isolation of children with special needs. It can limit their opportunities for social interaction and make it more difficult for them to develop appropriate interpersonal skills. The lack of such skills creates obstacles to proper adjustment. Without the experience of living and working in community settings, it becomes more difficult for students with disabilities to live and work in the “real world” after they leave school. In addition, separate placements can stigmatize children with special needs. A sense of being different may cause a child to develop a negative self-image which can prove to be a greater obstacle to living a fulfilling life than any disability or learning problem…

 …The Comprehensive Local School: Regular Education for All Students with Disabilities is part of the continuing effort to develop models that will make it possible for all children with disabilities to be educated in regular educational settings.

That we are still discussing this concept of “inclusion” as if it were novel is disturbing and disheartening. And that the United States Department of Education continues to fund redundant research and programs, such as Sailor’s Schoolwide Integrated Framework for Transformation (SWIFT) to the tune of $24.5 million, the “largest grant in KU’s history,” for concepts that have been long-since proven to be educationally beneficial yet not implemented, has got to stop.

Once the 19^th Amendment passed, I don’t recall over 25 years later hearing about women showing up at the polls only to be refused a ballot. And I don’t recall over 25 years after the passage of the Civil Rights Act hearing about signs mysteriously reappearing above water fountains for “White” and “Colored.”

So, who is to blame? The United States Department of Education and their Office for Civil Rights, first and foremost! No matter how you slice it or dice it, segregation and discrimination in special education is a civil rights issue. And, until we see it as such, there will be no concerted effort to end segregation and discrimination for individuals with disabilities so that they, and their families, can move forward permanently. We cannot champion this cause as fractionated groups related to a specific disability, be it autism, Down syndrome, cerebral palsy, hearing impaired, visually impaired, learning disabled. Until we see ourselves as ONE community, speaking for ONE civil right – the right to be counted, the right to be included – nothing will change.

http://archive.news.ku.edu/2012/october/3/education.shtml

http://rps.sagepub.com/content/39/1/55.full.pdf

http://today.ku.edu/2015/01/27/professors-argue-time-has-finally-come-fully-end-segregation-special-education-students