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

IMG_2475Last 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.”


Seeing Life from the Outside In

To travel to Mayo Clinic is to be among the sickest of the sick. Some are only here for their routine medical care or for the peace of mind that they have done all that they can do to maintain good health. Others are here for that elusive diagnosis, or as a last resort for quality or quantity of life. They travel from near and very far, from states across the country, and from countries on the other side of the world.


It is humbling to walk the halls and ride the elevators with people, many in wheelchairs, too sick to support their own weight. The elderly being pushed by their elderly spouses, committed to their vows, “till death do us part.” Children being pushed by their parents, committed to the hope that they will outlive them. And some visiting alone, helped by Mayo volunteers and the kindness of strangers. But, no matter their age or circumstance, individuals are here looking for health but likely leaving with much more.

I’m no stranger to this place. I’ve spent over twenty years traveling to Mayo Clinic, enough so that I can recommend Rochester hotels, coffee shops, and restaurants, or a place to pray. For all these years, it has been as a mother, fighting for our oldest daughter to outlive me. Now into her thirties, I can say without hesitation that Mayo Clinic saved her life. And I can say without hesitation that Mayo Clinic has improved and maintained the quality of her life and of our family. I am deeply grateful. And now, for these last few years, I have come to Mayo Clinic as a patient.

Among the emotions I can see on the faces of patients, I often observe fear and despair. But I can’t help but see and feel hope. And I am always moved as I experience the dignity of the human condition. We will all die; it is just a question of when and from what. But, in the meantime, it is about life, about health, and about others.


I’m not convinced that one can truly comprehend the value of life and health unless one has experienced the suffering or death of a child. There’s a “wrongness” about it, something deeply moving yet troubling that life lessons must be learned at their expense. But what would be “more wrong” and “more troubling” is when those experiences provide no learning at all. Indeed, what a waste of a precious life.

Instead, it is a priceless opportunity to experience life from the “outside looking in” rather than from the “inside looking out.” It is an important lesson of empathy for another rather than only sympathy for oneself.

I don’t wish the need to travel to Mayo Clinic on anyone. But to experience it is to observe life’s lessons: the fragility of life, the importance of health, the value of compassion, the necessity of empathy, the gift of support, and the preciousness of love.

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!)

DepositionI 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 19th 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.




The Closet

I’m sure it’s not an original thought of my grandmother, but “we spend the first half of our lives collecting stuff and the last half giving it away.” I think it’s safe to say that, at age 57, I am in the “last half” of mine. And, as if the expression of the “purge stuff” gene lays dormant until age 50, it has reared its wonderful head and is now in full swing. The “giving away” has begun, and the Salvation Army and the trashcan are the lucky benefactors.

Let me tell you, going through papers is a bit like an archaeological dig. Those at the top of the pile represent the most recent in time while those toward the bottom are the “ancient history.” And each stack is like a digest of your life. On a given week (or two…or three), I struggle with getting through the Sunday newspaper and then disposing of (er, recycling) it. So you can imagine how quickly I can collect a wee bit of paper!

Okay, so “It depends on what the meaning of the word ‘wee’ is.” Ya, ya, there’s some paper. Some of it is just too “hot” to handle: old, OLD IEPs that are inexplicably depressing and should honestly be ceremoniously burned, or documents from legal battles that represent years of my life doing what was necessary and right…but are now just too painful to touch and too “important” to throw away (perhaps material for that next book that never seems to get started). Sure, I get through some of the piles but then there are those piles that, well, continue to be piles.

Beyond the paper, there’s the “stuff” and all that it represents: clothes in my closet saved for years in hopes that twenty pounds might miraculously fall off my hips and thighs (I think I can now be rational and accept the fact that there are no fairy godmothers and I will not be spending hours at the gym), or “tacky sweaters” that might at some point no longer be considered tacky (nope, still tacky and always will be), an upholstered headboard and matching bedding originally designed for a 12-year-old’s bedroom (cute stuff but she’s 23, has graduated from college, and is on board that her room does not necessarily need to be a shrine to her youth), and assorted cookie tins (so, I guess I thought I was opening a bakery or would find time to bake for neighbors? Ya, didn’t happen).

Inspired by the title of the theme song from the movie “Frozen,” I’ve made headway cleaning out drawers and closets. “Let it go, let it go…” (That’s it for knowing the lyrics to the song. I told you I was decluttering my house. Why the heck would I want to clutter my brain with unnecessary lyrics?)

But then there’s the closet that is apparently emotionally “off limits.” Although it holds more than costumes, it is known as “the costume closet.” It holds the Harry Potter glasses and matching Gryffindor tie for when you might receive your letter by owl to attend Hogwarts, the witch’s robe and twig broomstick for when you might want to freak out the people you have already freaked out by dressing up as Harry Potter (you know, “those people”), or the white doctor’s coat and black gloves to become Doctor Nefario. (Hmm, are you thinking what I’m thinking? In a pinch, the Harry Potter glasses could be worn to improve the Dr. Nefario costume!) In any case, am I leading you to believe there are only costumes of witchcraft and evil? If so, that’s just not true. We can’t forget the pirate wench or naughty strawberry girl costumes that came home from college and made their way into the closet, too. Not all witchcraft and evil. Slutty, too!

You say you don’t have a costume closet? Hmm, everyone needs a costume closet! That’s where all the cool stuff is stashed to become someone you otherwise might not get to be. And that stuff isn’t going anywhere. Forget the lyrics! I ain’t lettin’ it go!

But then there’s the rest of the stuff in that closet that is apparently emotionally off limits: the neatly stored toys and the perfectly preserved children’s clothes. Dozens and dozens of them. Apparently, when the “purge gene” kicked in, there must have been a variant strain because it has, so far, not included that closet.

So, when I began hearing, “let it go, let it go…,” I finally began doing some soul-searching related to that closet. I know why I wouldn’t touch the costumes. But what gives with the toys and the four rods of children’s clothes neatly arranged by size?

The toys? Ya, there’s an explanation of sorts, I guess. We’re “stuck” developmentally. We haven’t quite outgrown them and haven’t quite moved on with our daughter with special needs. Ya, she’s thirty…but she’s not…”thirty.” Not just for the future grandkids, those toys might occasionally be pulled out for brushing up on some skills…say, at 32 or 33.

And the clothes? I guess I just can’t part with them because I can’t accept how I wasn’t able to take those years or moments in…getting to just be a mom…rather than trying to create those perfectly worded, but awful, unfulfilled IEPs. The ones that the educational system agreed to, then thumbed their nose at and ignored. The ones that I can’t burn. Or when I was fighting those blasted legal battles that did more for lining the pockets of attorneys, and for the families who came behind us, than they ever did for my daughter or my family. That’s when my children wore those adorable outfits. When I was fighting battles. When I was running to multiple therapy sessions a week for our oldest after the brain damage when the surgeon botched her open heart surgery. When I was desperate for help and none was forthcoming. My children looked clean and adorable and precious, but circumstances were such that I didn’t get to take it all in.

Surely there’s a costume in that closet for a “mom.” That’s what I wanted to become that I didn’t get to be. Just a mom.