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A diary of a mom by Jess - 2M ago

I was recently part of a conversation in which another parent recently said, “I️ don’t want my child to know about their disability because they have to learn to make it in the real world.”

I hear this sentiment quite a bit, and every time, I respond with some version of, “I believe, with every fiber of my being, that my child MUST know about her disability because she has to learn to make it in the real world.”

It is absolutely true that the real world is not always accommodating to those with disabilities. Hell, sometimes, it’s downright hostile. We’re working on that, by the way. But here’s the thing, friends (come closer, this is important) ..

Whether or not you tell your child they have a disability does not affect whether or not they are disabled.

Stay with me. We’ll process this together.

If a child isn’t able to walk, not telling him that he can’t walk doesn’t make him able to walk, nor does it make him any less aware of his inability to walk than I promise you he already is. Trust me, a kid who can’t walk knows that almost everyone around him can walk and he can’t. (And the other kids? They know too.)

That said, if we refuse to acknowledge his disability for fear that it will make him disabled (which we’ve already agreed isn’t how this works) then we can’t talk to him about all of the things that he needs to know to make it, as a disabled person, which is what he is, in the real world.

He needs to know that there are myriad ways to be mobile that don’t involve walking.

He needs to know there are ways to make the world work for him, but that he’s going to have to ask for help, find the tools he needs, navigate complex systems that are fraught with pitfalls and obstacles and loads of cynicism and self-doubt.

He needs to know that he can can and must set exceedingly hard goals and that he can achieve great and awesome and wondrous things … and that he’s going to need some compensatory skills in order to do them that his peers may not.

He needs to know that he’s going to face bigotry, both overtly and in its more insidious form of quietly lowered expectations and that he cannot ever accept the limitations that ignorance seeks to place on him.

He needs to know that he will have to constantly fight back against the voices of ableism – both outside of himself and within, sometimes just by showing up.

He needs to know that he can, if he so chooses, be part of a vast movement of folks working on making the world a whole lot more inclusive.

He needs to know that there are people who can help him along the way and that there are ways to identify who those people are.

He needs to know that there is a whole world out there of people like him – who are disabled in infinite ways – who live amazing, fulfilling lives. He deserves to know that he can find those people and that when he does, it will feel like coming home.

And so every time I hear someone say that they don’t want their child to know about their disability because they have to learn to make it in the real world, I say that I believe, with every fiber of my being, that my child MUST know about her disability because she has to learn to make it in the real world.

I can tell my autistic daughter that she’s neurotypical until I am blue in the face, but it ain’t gonna change her neurology. What it will do is deny, or at least delay, her understanding of who she is, of why she looks and acts and feels so different from her peers, of why so many things are so challenging for her, of why some people just don’t get it, don’t get her. It will take away her pride in knowing that she’s part of a beautiful, vibrant community of similarly different folks. And worst of all, it will leave her vulnerable to a real world that is sometime downright hostile to those with disabilities, with no language nor framework for navigating it.

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There’s a wonderful little market not too far from where we live. Along with some every day staples, they carry a wide variety of really eclectic foods from all over the world. The small shop is as much a feast for the eyes as the belly, with a dizzying array of goodies from everywhere imaginable.

Until last year, I’d been in less than a handful of times in twelve years — to grab a soda, maybe, or to treat Katie to a box of her favorite British cookies, impossible to find anywhere else.

And then one day about a year ago, Katie and I️ ducked in for a candy bar … and everything changed.

The owner asked if we were local. I️ said that we were. “I️ thought I️ remembered you,” he said, “but I️ don’t see you in here much.”

I️ told him that we don’t come in a lot. He asked where we tend to shop. I️ told him. And then he told me how hard it is to run a small business in a place like Boston. “Because,” he said, “people like you go to Wegman’s or Whole Foods because it’s easier. You come here once in a while and then I️ don’t see you again for years,” he added. I️ couldn’t deny the truth in his words.

He told me that there had been four stores like his when he opened 16 years ago. His, he said, is the only one left. “But I️ don’t know for how much longer,” he said, “if people don’t come.”

I️ promised him that I️ would be back and he smiled and waved as I️ left.

Later that week, I️ showed up in search of that night’s dinner. “All right, Sir,” I️ said, “Let’s talk dinner. What have ya got for me?”

He didn’t answer right away. He stared at me for just long enough that I️ wondered if he’d forgotten that we’d spoken just a couple of days before. And then he walked out from behind the counter, stood right next to me and said, “You came back.”

“Of course I️ did,” I️ said. “I️ told you I️ would.”

“Everyone says they will,” he said, “but they never do.”

He shook his head slowly before saying again, “You came back.”

By the time I️ left, my bag full with the fixings of that evening’s dinner – fresh ravioli, a half-baked baguette, and a fabulous bottle of Syrah, I️ asked if it would be okay to hug him. I️ had come in for dinner, and I’d left with a friend.

Over time, we fell into a routine. Brooke requested Mo’s ravioli at least once a week. Luau discovered that he carries his favorite beer. And Katie, of course, was thrilled to support the international candy trade.

Everyone in the family knows that if we’re going to Mo’s, we’ll need time to chat and room to try whatever it is that he is offering up. Mo is big on ‘samples.’ If he has nothing already open, he’ll tear into a bag or a box or a bottle. You’ll never leave without “just a little taste” of something.

One day not long ago, Brooke and I️ were headed to Mo’s to buy her ravioli when my dad called. When he asked her where we were going she said, “To see my mom’s friend, Mo.”

A few weeks ago, there was an incident in Mo’s store. A customer had become belligerent and ultimately, someone had called the police. When it made the news that they had yelled racial epithets and told Mo to “Go back to his country,” there was a collective gasp from around our town.

What followed was outrage, and a fabulous outpouring of love and support. I️ called Mo the day that I️ saw the story. He was touched, but more than anything, he sounded a little bewildered by the reaction. “Jessie,” he said, “this isn’t new. This has been happening nearly every day for sixteen years.”

The only reason that anyone even knew this particular story, he said, was because the police had been involved. “Every day, Jessie,” he said again. “Every day.”

He told me that he’d been warned against opening his store here. That he was told that he shouldn’t go where “they didn’t want him.” That no one would want to do business with someone “from a terrorist country.”

He told me about how he couldn’t turn back. About how he’d mortgaged his home to buy the business and how his family’s welfare depended on him making it work. He told me that he’d changed the store – that he’d designed it around hard to find items and about the folks who come in to this day and insist on telling him that they are only buying from him because he’s the only one who sells what they need.

He told me about the name-calling and the quotidian racism that to him, has become part of doing business.

Some regulars of Mo’s have organized what they’re calling a love mob – a rally of sorts to show support for him. It’s beautiful and lovely and, if I’m being painfully honest, makes me really nervous.

You see, we self-proclaimed progressives have this thing that we do. We clutch our pearls in outrage when we are confronted with the fact that hate dwells among us, even though those on its receiving end have been telling us until they’re blue in the face that this is their every day reality. But it’s new to us. Again and again, somehow, it keeps being new to us. And so we look, each time, for a way to express our shock. We tend toward loud, showy displays of solidarity. And they’re good and important and meaningful. They draw the attention and energy that is so desperately needed to combat bigotry and prejudice. They attract news cameras and create fodder for stories that shine a light, at least for a moment, on that which lies just beneath our shiny – if painfully thin – veneer of inclusion.

But then what? What happens the next day, the next week, the next year? What happens to Mo once all of us are done making ourselves feel better about this one thing that we now know happened? The regulars who so lovingly organized the event will still be there, and that’s wonderful, but what about the rest of us?

I️ went to see Mo today. I️ bought breakfast and coffee and stocked up on ravioli for Brooke. He made me taste ice creams at 10:30 in the morning. (I️ hated the rose and the parsley but fell so hard for the saffron pistachio that I brought a half-pint home.) And, as always, we talked as he packed up my purchases.

He told me about someone who came to see him recently, to offer their support after they’d heard what had happened. They’d told him how much they’d always liked him and what an awful shame it was that he’d had to deal with that kind of hate.

He said that he’d asked them where they’d been. It had been ten years since they’d been into the store, he said. “Ten years,” he repeated more slowly.

He deeply appreciated their coming to see him and was truly grateful that they had made the effort, but asked, “If they really wanted to support me and the store, where have they been?”

It’s not always easy to go to Mo’s. The parking isn’t great and he doesn’t have everything that I️ need, so I️ can’t get everything done at once. More often than I’d like to admit, I️ drive by once and if I️ don’t find a spot immediately, I️ give up. I️ go somewhere bigger, somewhere closer, somewhere just a tiny bit cheaper. Somewhere .. easier.

But I’m working hard to change that. Because it matters.

The rally will undoubtedly be great. I’m hoping that we can get there on the day it happens to help show Mo how much we love him. He deserves nothing less. But I’m also going to do my damnedest to remember that he and so many good folks like him also need us to do a whole lot more.

And it’s not exactly a hardship. I mean, the saffron ice cream is pretty fantastic.

Note: This story is shared with Mo’s generous permission, for which I am grateful. 

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{image is a photo of Reverend Dr. Martin Luther King Jr. January, 1929 – April, 1968}

Today, as we honor the life and legacy of the Reverend Dr. Martin Luther King Jr., we read his words in a context that feels in many ways to be no less fraught, no less complex, no less urgent than the time in which he first delivered them.

“History,” Dr. King said, “will have to record that the greatest tragedy of this period of social transition was not the strident clamor of the bad people, but the appalling silence of the good people.”

Today, as some in the highest seats of power seek not progress but provocation, not the cementing of equality but the rolling back of hard-won rights, not unification but the scapegoating on which their platform so desperately depends, the Reverend’s words do not read as dusty relics of our nation’s past, but rather a searing testimony to our present.

“I am not afraid of the words “crisis” and “tension,” he said. “I deeply oppose violence, but constructive crisis and tension are necessary for growth. Innate in all life, and all growth, is tension. Only in death is there an absence of tension. To cure injustices, you must expose them before the light of human conscience and the bar of public opinion, regardless of whatever tensions that exposure generates.”

I have read those words more times than I can count over the years and yet I find myself called to them again and again and yet again still, their startling relevance to this moment in history a scathing testimony to how much work is yet to be done.

Dr. King was murdered before many of us were born and yet still he calls us to action: to introspection, to justice, to the resistance of retrogression and an unwavering insistence upon forward movement.

“As much as I deplore violence,” he said, “there is one evil that is worse than violence, and that’s cowardice.”

In an age when retribution is often as immediate as it is devastating, even the smallest acts of protest can be daunting. But silence is complicity and complicity is harm.

“He who passively accepts evil is as much involved in it as he who helps to perpetrate it,” the Reverend said. “He who accepts evil without protesting against it is really cooperating with it.”

One of Dr King’s most oft-repeated quotes is, “Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”

It’s easy to repeat, but much harder to live. Because the love of which he speaks is not passive. It is not meek. It is not quiet.

The love that drives out hate is messy. It’s disruptive. It’s loud. It’s brave.

The love that drives out hate is an irresistible yearning to be better, to do better, to dig deep into the place where our humanity dwells and to bring forth from that place the very best of what we find there.

Dr. King’s love is a call to action. A call not to hope for but to get down into the dirt and BUILD the world of which he dreamed.

“The time is always right to do what is right,” Dr King said. The time, my friends, is now.

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A diary of a mom by Jess - 2M ago
There are just so many parts of this that are so egregiously wrong; it’s hard to know where to begin. But in the midst of it all, there’s one thing that I just have to say, eloquence be damned ..
There is no hierarchy of humanity, no test that one must pass to be worthy of recognition as a human being. The right to dignity is not conditional. Respect for life is not a zero sum game.
As happens in times like these, we jump to the defense of marginalized peoples by proclaiming, and encouraging them to proclaim, their achievements as proof of their worth. We hold up shining examples – luminaries in various fields: academics, athletes, activists – and their remarkable contributions to society become our argument for their value as human beings.
Years ago, I wrote the following:
What I inadvertently said so many times boiled down to this: While my daughter is autistic, she is not intellectually disabled, and therefore you should not discount her worth.
What I did not see was that I was lifting her on the backs of others.
It is now so painfully clear that it was an unconscionable and indefensible argument, but it’s one into which many of us have been conditioned. We thrive on comparison. And we trade in its marketplace with the currency of human dignity.
My daughter’s IQ has no more bearing on her value than whether or not a man from Haiti has a college education or a girl from Nigeria speaks four languages or a farmer in Sierra Leone has never learned how to read.
And so I say again, there is no hierarchy of humanity, no test that one must pass to be worthy of recognition as a human being.
Our worth, individually and collectively, is not based on some magical formula quantifying our ability to participate in a capitalist economy. It’s not determined by the titles we hold, the degrees we’ve earned, or the nations we call home. It’s not contingent upon, well, anything.
Our worth is inherent.
And never, ever subject to comparison.
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A diary of a mom by Jess - 2M ago

When Katie coughs, Brooke shrieks. It’s a visceral, reflexive, heartbreaking response. It looks, for all intents and purposes, like a reaction to a physical attack.

It’s been a challenge for years. So long now, in fact, that I don’t remember a time when it wasn’t a part of our lives – the elephant in the room around which we often contort ourselves in order to get through the day as a family.

Five years ago, I wrote the following:

The night before last, I took Katie out for ice cream. It was a school night. It was cold. I was toast after a long day of work, fighting off the beginnings of the same cold whose tail end continues to dog her. We had no right, nor any real desire, to be going anywhere. But we had no choice.

She had been coughing through dinner. She couldn’t control it. And her sister, no matter how hard she tried, could not control her reaction to the cough. She finally melted down completely – crying, screaming, and shaking.

I did everything in my power to make it better. But it wasn’t in my power to make it better. Katie had to cough and Brooke’s wiring simply couldn’t process it.

With all of my energy focused on trying to calm the little one, I missed it at first. I might have missed it completely had I not heard the sniffle. Katie was crying too. “What, baby?” I asked.

She shook her head.

“You know it’s not you, sweet girl,” I said. Please remember that it’s not you.”

She shook her head again. “It IS me, Mama,” she said. “Of course it’s me. I’m the one she’s afraid of. I’m the one making her miserable. How could it not be me?”

For those of you who are new around here, Katie is my neurotypical twelve year-old. She is bright as a whip. She’s more insightful and intuitive than most forty year-olds. She gets the joke. She gets people. And still, she can’t internalize the idea that her sister is afraid of her cough and not of her. And why? Because the message is clear. The cough doesn’t exist without her. The cough doesn’t walk into a room under its own power and upset her sister. But she does. Katie does.

And right now, simply the sight of her scares her sister because she is the one coughing.

Very little has changed since then. In some ways, it’s gotten worse with time and wear.

Over the years, we’ve tried everything we could think of to make it better, from giving Katie medication for her seasonal allergies to giving Brooke a thousand and one strategies to handle the cough. I promise that whatever you’re thinking right now, we’ve at least researched it and likely tried it. Nothing has worked.

But as we know, while strategies might not change over time, our kids do. We all do. They grow and develop in ways both seen and unseen, filling their toolboxes in ways we might never have imagined possible. And so we circle back to things that didn’t work before. Because the fact that they didn’t work for the us we were then doesn’t mean they won’t work for the us we are now.

Yesterday, I approached Brooke with an idea. I told her that I’d asked one of the therapists at school to help me write up what’s called a desensitization program. “A whuh?” she said. I couldn’t help but giggle.

I explained, in words that I thought would be accessible to her, that it was a way to make something that’s very hard for someone less hard by exposing them to it a little at a time. I reminded her that we had used this kind of program when she was struggling with the fire alarms at school. “Oh, yeah!” she said. “And I’m not scared of them anymore!” she added, “But I still don’t like them.”

I told her that, just as she had with the fire alarms, she would watch YouTube videos,  but this time they’d be of Katie coughing. I told her the part that I thought was most important and that I’d stressed to the therapist who’d help me devise the plan — that Brooke would have complete control over the videos and their volume. That no but but her would control the sound and that she could turn them off or walk away absolutely any time she needed to, for any reason whatsoever.

I asked if she was on board. “I guess,” was the best I got.

I told her why. Why I think it’s so important for us to keep trying. I told her that Katie really wants to be able to spend time with her, and that all of us really want to be able to spend more time together, as a family.

“And then we could be funny together,” she said. “And because of she loves me.”

“Exactly!” I said. “Because we all love each other. So we really want to get to a place where when she coughs, you ..”

I stopped myself. I wasn’t sure how to finish the sentence. I didn’t want to say, “don’t scream” or “don’t cry,” or “don’t hurt her feelings.” I wanted to frame it differently, positively, to make her understand that we weren’t trying to “extinguish a behavior” but rather address the challenge that created it. But I didn’t have the words.

” … can be okay” she said.

I took a deep breath.

This kid never, ever ceases to blow me away.

“Yes,” I said, “That is EXACTLY it. We really want to get to a place where when Katie coughs, you can be okay. So what do you think?”

“I think that too,” she said.

She had two requests: that Katie make the recordings in the car and that they be voice memos on my phone, not videos. Since I’m a little slow on the uptake, it took me a minute to realize that the location request was to ensure that she wouldn’t have to hear her coughing in real time. As for the voice memos vs. videos, I can only assume that they are less overwhelming and easier for her to manage without the added sensory onslaught of the visual piece. She wasn’t able to tell me why, but no matter the reasons, I was happy to oblige.

Later, we talked to Katie. Together. She told Brooke that she’d be happy to make the recordings. She asked if she wanted her to add in some silly sounds, just for fun. Brooke said, as she often does, “Surprise me.” Katie promised that she would and proceeded to make a horrible noise as though she were vomiting. It was gross. And Brooke laughed.

“I’d really like it if we could hang out together, Brooke,” Katie said.

“And be funny together,” Brooke added.

Katie smiled at her sister. “Yeah,” she said, “We could definitely be funny together.”

It might not work. Or maybe it just won’t work … yet. But no matter what the result, the conversation itself is staggering. The idea that we could talk about it, that we could come together around a common goal, that we could tweak the process to make it more comfortable before it even began – my God, y’all, I still can’t believe that this is where we are, lifetimes away from where we began.

“I have a sister named Katie,” Brooke said. “Sometimes Katie needs to cough.”

I smiled. “Is that from the social story Ms Jennifer wrote for you in preschool?” I asked.

“I do not like when Katie coughs,” she continued. “It is okay to not like the sound of Katie coughing. Maybe Katie has a cold, maybe she has a scratchy throat, or maybe she swallowed too fast and she feels like she needs to cough.”

“You remember ALL of this?” I asked, incredulous.

She went on, undeterred. “Coughing is a good thing,” she said. “It can make Katie’s throat feel better. It is okay if Katie coughs. I do not need to worry or be afraid of the noise. It is okay if I don’t like the sound of Katie’s cough. I know that when Katie’s throat feels better, she will stop coughing and the noise will be all done.”

I marveled at my girl. At every word of a story written eleven years ago, preserved in perfect order in that beautiful, steel-trap (or, if you prefer, autistic) brain.

“If I do not like the noise,” she continued, “I can whisper, ‘All done cough,’ I can still do what I was doing. Maybe I was playing, or maybe I was eating. Soon Katie will stop coughing. Mommy and Daddy will be so proud of me when I am quiet when Katie coughs. They can give me a hug or a kiss or a high five. Hooray for me for being such a good girl.”

Along with the words she recited, I now heard, in stark relief, the ones that we hadn’t yet written.

“I can’t believe you remember that whole story,” I said.

But of course I can.

How many times do I have to relearn the lesson that my daughter hears and sees and remembers EVERYTHING – and that she always has? That she’s recorded this process of evolution and development, both hers and ours (neither, I’d argue more dramatic than the other) since day one. That she sees the patterns we miss, the respect we misplace, the mistakes that we make, time and time again.

That she gets the joke and can tell it better than any of us in the end. And that while she doesn’t always have the words to tell us what she knows in our language, she’s always waiting patiently for us to catch up, and, in the meantime, teaching us hers.

{image is a photo of Katie and Brooke on the Fourth of July}

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A diary of a mom by Jess - 5M ago

They’ve been repeated a thousand times, in a thousand different ways. The nuance doesn’t matter in the end; which groups he may or may not have actually cited is immaterial, really. Martin Niemöller was a German pastor who was arrested for defying Hitler and his campaign of hate. To this day his words stand as a poignant reminder of the peril of political apathy. But today, to me, they are more:

“First they came for the communists,

and I didn’t speak out because I wasn’t a communist.

Then they came for the socialists,

and I didn’t speak out because I wasn’t a socialist.

Then they came for the trade unionists,

and I didn’t speak out because I wasn’t a trade unionist.

Then they came for me,

and there was no one left to speak for me.”

I always thought those words meant that I had to speak out when I saw injustice. They do. I always thought they meant that I had an obligation, as part of the human family, to defend the dignity, rights and ultimately the humanity of others. They do. And I thought that that was where my responsibility ended. It wasn’t.

A few nights ago I had a conversation that changed everything. (Funny how one interaction can do that, how talking to one person can trip a switch, open a valve, make everything look different, isn’t it?)

The young man was not what people thought he was, he said. His sexuality was not what it appeared to be. It wasn’t simple. The girlfriends whom he had brought home had made assumptions easy, he said. To all the world he looked straight. Why would anyone think anything different?

I was glad that he was comfortable telling me. I’ve done everything I can to live my life in a way that advertises my friendship as a sanctuary, as a safe space. But his fear made me ache.

“I hope that you’re not giving enough credit to the people in your life,” I said. “They know you. They respect you. They love you. Hopefully their love would be bigger than their fear or even their deep-seated bigotry. Hopefully, if you talk to them about who you are, about how you feel, there will be an open door.”

We talked about how situational disclosure tends to be, how it doesn’t always feel necessary to lay it all out on the table until there’s a relationship involved, until, I suppose, there would otherwise be something to hide. But already this wasn’t sitting right with me. The waters were rushing the dam.

Nevertheless, I found my jaded, 42-year-old, formerly idealist self slowly shaking her head at the self-importance of youth. “Ah,” she said to herself with a smirk, “I remember the days when I thought that the world waited with bated breath for my every pronouncement.”

She wanted to tell him, “Wait! There’s no reason to make declarations from the mountaintops. You may well fall in love with a woman, marry her, have babies and then what? The angst would have been for no sake but its own.”

Thankfully, no one could hear her but me.

But it wouldn’t matter for long, because the valve opened, and everything changed. Suddenly it was all crap, all the “Wait” and “the angst for no sake but its own.” Utter crap.

I found myself wanting to shake him by the shoulders.

“Be yourself!” I wanted to shout at him. “Be who you are in all your wondrous, messy, glorious humanity! Love yourself first, and set the example for those around you. Use that love to change the hearts that live in the darkness of fear. Tell them! Tell them that sexuality isn’t always linear, that it isn’t always simple, that it isn’t always what it looks like, and that, for the love of God, it isn’t some abstract concept or merely a topic for political theater. Tell them that this is part of who you are, you, the person whom they love. Change the world, my young friend. You can. Only you. And lots of other yous. But one you, one heart, at a time.”

I married a wonderful man. I had babies. I love my husband dearly, and I adore my life. To all the world I am a straight woman. And why would they think anything different? And why would it matter either way? Until that moment, I didn’t know why it mattered so much.

I believe in equal rights for ALL human beings. I believe that gay rights (and disability rights; more on that to follow) are, in the simplest terms, civil rights. I believe that no one ever has the right to impose his or her belief system on another human being. I have talked about it; I’ve written about it; I’ve lived it. I have said, “This is what I believe,” but never have I said (publicly), “This is who I am.”

Well, this is who I am.

Just before I met the man who is now my husband, there was someone else in my life — someone wonderful, someone with whom I had a nearly electric connection, someone who was smart as a whip and funny as hell, someone who was talented and beautiful and who, in turn, made me feel talented and beautiful, too. Someone who challenged me and made me think and feel and try new things, someone who pushed me to be a better version of myself, someone whom I adored, and someone with whom my life would have been — from the outside, at least — very, very different had time written a different script for us.

Depending on where we chose to live, we might not have had the right to marry. And there might have been people in my life — in our lives — whose preconceived notions about love would have changed their opinion of me.

I never had to live that. I have no idea what that really feels like, but only because life went in a different direction and the person with whom I ultimately fell in love for keeps happened to be a man.

It doesn’t come up much, but there are moments. There are dropped pronouns in stories of my past. There are thoughts left without a voice. And then there are times when I am praised for being an ally to the LGBTQ community. It is in those moments that I feel the most like a fraud.

My daughter is autistic. Disclosure within the autism community is a big topic. I’ve written about it ad nauseam. In 2010, I wrote this:

“It’s almost inevitable. If enough of us are together in one room, someone will ask, “How did you decide to talk openly about Brooke’s autism?”

I will tell them that we believe that the only way to extract the stigma from the label is to demystify it. To make it real. To give it a face, a name, a fabulous, messy, three-dimensional being.

I will tell them that we believe that awareness leads to compassion and compassion to acceptance.

I will tell them that we believe that ignorance perpetuates discrimination and fear.

I will tell them that we feel that secrets imply either shame or fear. Or both. I will tell them that I want neither in my home.”

Later in that post I would ask a question of my own:

“What if we could bring these folks TOGETHER? What if we can give them a tool with which they can identify themselves and EACH OTHER?

What if the label is a gateway to the monumental understanding that our kids and their peers are NOT alone?

What if this group – this incredible group of people – this group that can so easily feel so desperately isolated from their peers – what if they found out that their differences, in and of themselves, are not so damn different after all?”

The other night, listening to this young man speak, I thought of the kids coming up behind him, the ones who feel different, who feel isolated, who are afraid of what they’re feeling, who still carry the weight of this ludicrous stigma.

I thought of the ones who would pass right by him without ever knowing that they weren’t alone.

I thought of the immense power that he had to help smooth the road for them, one heart at a time — the power that he wasn’t using, the power that he, for a million reasons, might not be in a position to use, because bigotry is real, and because coming out can be far riskier than losing friends. It can be dangerous. Hell, it can be lethal.

But it wasn’t about him anymore. His power, and how he chose to use it, was his choice, and it wasn’t the point.

The point was my power, and the fact that I was looking in the wrong direction for change. I was frustrated with myself, not with him.

I live with the privilege of others’ assumptions about me. And by allowing those assumptions to stand, I also allow ignorance to stand.

Not anymore.

To those of you who think differently of me after this revelation, I say the following:

You know me. You have read my words. You know my heart and my children and my failings and my pride. You know my fumbling, imperfect faith. And now you know that there is one more dimension to me that we’d yet to talk about, no more and no less, just one more piece of who I am — a bisexual woman who stands up for equal rights, not only because it is unequivocally the right thing to do but because it’s time that I say, “They came for people like me, and I spoke out for us.”

This post was originally published on 2012 on HuffPost. It has been edited slightly for republication.

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{image is a photo of Brooke waiting for Big Joe to make her a balloon monkey while Katie watches.}

I’m not going to lie. I’m not even going to pretend to be modest about this. What follows might be the greatest thing I’ve ever shared with you. And not because I wrote it – or at least not the part of it that matters – but precisely because I didn’t. What you are about to read is the same story told twice. The first version is written from my perspective; the second is Brooke’s.

It is the story of her fifth birthday party. It was, as I told it, mostly a disaster, and mostly a disaster of my making. I wrote it as a lament of how little I knew, of how many perfectly avoidable mistakes I’d made in planning the party, of how heartbroken I was that she’d had such a hard time.

It was, as she tells is, a triumph. She wrote it .. and added to it and refined it and revised it in school over the course of months. The assignment was to describe something that she’d had to – and did – overcome in her life. She could have chosen so many things. This .. this is what she wrote. It is a celebration of her will, her spirit, her light.

“Because I am a young lady who can let go and move on,” she told me last night. I recognized the words from her school’s motto. They held no less weight just because they happen to be on every wall at school. They meant something to her. And so to me too.

This is the story – from my perspective and then hers. Watch for the differences. They matter the most.


From Diary, April, 2008 …

We had set up the basement for the show and then planned to bring everyone upstairs for pizza and cake. Big Joe had the fantastic idea of making balloon animals for the kids as they filed in to keep them entertained before the show began. So, our proud birthday girl was first in line to get her balloon. Big Joe said, ‘OK, my dear, I have loads of animals I can make for you. I can make cats, dogs, bunnies, swans, snakes (hmm, I can make a snake I thought, just hand her the balloon), hats, horses and giraffes. So, of course, when he said, ‘So what would you like?’ she said, ‘A monkey.’ So he ran through his list again. And when he said, so which of THOSE would you like, Brooke?’ she got to say it again. ‘A monkey.’

Now here’s the thing. Brooke has some very consistent favorites, and, as you might expect, she can be pretty particular about them. Color = red, Shape = star, Number = 2, Letter = Y, Animal = yeah, you got it  – monkey. So, she wanted a monkey. Anyone else thinking of that kid in The Wedding Crashers saying,  “Make me a bicycle, clown.”? Anyway, I digress.

Now Big Joe knows his audience and he confidently assured us all that although what he was about to make would have a striking resemblance to a dog, our little princess would absolutely love her ‘monkey.’ And he pulled it off beautifully. Ah, the power of suggestion. So she walked away happily clutching her monkey dog. Then the room began to fill.

As the low-ceilinged room filled, it became a sensory nightmare. The noise level skyrocketed. The kids ran from one end of the room to the other, children screamed for their parents, parents excitedly greeted each other. Brooke did what Brooke does. She shrieked and ran upstairs crying. We thought it wise to let her stay upstairs in the relative quiet and wait for all the kids to gather and get their balloons and then, when things calmed down and everyone was seated for story time, we’d head back down and join the party. We sat in her favorite chair and I sang in her ear to calm her.

So, for the first twenty minutes or so, Brooke’s party carried on downstairs without her. We broached the doorway to the stairs a couple of times but she balked immediately at the noise. But hey, it sounded like our guests were having a great time.

Okay, time for the stories .. The big moment. The realization of my baby’s vision of her party. Big Joe. Telling stories. At home. With all her friends (and Joanie the teacher). Deep breath, here we go, Honey. You’re okay. Down the stairs. Mama will hold you. It’ll be okay.

The kids are sitting nicely. But they’re laughing. Hard. And they’re wiggling around. And they’re gesturing along with Big Joe. And they’re shouting out excitedly. And the parents are laughing along with them in delight. And it’s her worst nightmare. And she panics. And runs. And we are upstairs. Again. And the party is going on without us. Completely.

She is shaking. And crying. And my heart is breaking for her. We sit in the chair. Again. I sing in her ear to calm her. Again. There are tears streaming down my face meeting hers. She curls up on me in the chair and rests her face on my chest. A mom walks into the room and tells me later she mistook us for a mother nursing a baby.

We can hear Big Joe from where we are. I encourage her to listen. At least maybe we can be a part of her party from here. I try to bring us to the door at the top of the stairs to listen better. It’s too close to the noise. She shrieks, perseverating on the number seventeen. “Seventeen! Seventeen! Seventeen!” We retreat. Again. Back to the chair. Again. I sing in her ear. Again. I comfort her. Again.

Another little girl is now upstairs too. She can’t handle it either. I pass her mom in the hall as I hold Brooke, bouncing slightly as I sing. I’m holding a five year old, but I know that I look like I’m soothing a colicky baby. I pass another mom whose husband is walking her son around the neighborhood because he too had to escape the room. She sees my red eyes and quietly says, “This is what we do.” I feel better. And worse.

The show is coming to an end. Earlier, I had heard Big Joe telling the kids he was going to dress up as a princess in the last story. I’ve got it – a hook! I know she’ll want to see that. I sell her on it. She wants to give it a shot.

We make it to the landing. We’re past the door. She hasn’t screamed. We’re making it down the stairs! This might work! I catch Joe’s attention and signal him to try to take the volume level down if he can. It’s too late. The kids are having a ball. They are laughing. They are yelling. They are having the great time we hoped they would. And all I want is for them to quiet down so my sweet baby won’t lose it.

She’s in the circle! She’s sitting! Wait, someone jostles her. She’s looking around. She’s not comfortable. She’s getting anxious. I can see her body starting to tense. Damn it. She’s in an all out panic. It’s been forty-five seconds and she’s yelling. And kicking. And looking up at me through tears, panicked, screaming at me, “I don’t want to stay!’ and it takes me a minute to piece together the words and understand her. And then I do.

And then we’re upstairs. Again. in the chair. Again. And my heart is breaking for her. Again.


From Brooke’s 8th grade memoir, June, 2017 …

Nine years ago, I was celebrating my fifth birthday. I remember feeling so excited for my friends  to come. The theme of my party was Dora the Explorer Halloween. The party took place on April fifth two thousand eight at my house. All of my preschool friends were coming to celebrate with me.

Big Joe the Storyteller came to tell fairy tales. Big Joe began the show, all my friends and I started to get so excited. Big Joe was sitting in a chair just like a teacher at school who is reading at storytime. My friends and I sat around Joe patiently waiting for the stories to begin. The very first story was Goldielocks and the Three Bears. Big Joe began to tell the stories using one puppet bear, whose mouth moved when Big Joe spoke. Everyone loved it!

Everyone was shouting with excitement and glee, but I began to feel a little scared. The noise of the laughing kids startled me. I started crying. I tried to find a quiet spot and ran upstairs to the living room because I was feeling so overwhelmed. When I got upstairs, I found my friend L. She was feeling overwhelmed too. I was so upset that a ran to the piano, sat on the stool and rested my head in my arms. After a second, I felt my mom’s hand on my shoulder. She was lightly stroking my arm saying, “It’s okay Brooke.” I was trying to be brave so I stopped crying. Having my mom comfort me was making everything better.

After a little while, I started to calm down and feel a bit better. So I came back downstairs to join the party. When we started to have my Dora Halloween Birthday Cake. My mom told everyone to sing to me quietly. This was really nice because I didn’t like it when the kids sang loudly. While everyone sang very quietly to me, I felt happy and proud. It was so nice of my friends to sing so I would not feel scared.

Looking back at this event, it is important to remember that when you have a challenge, you don’t give up. Just like at my fifth birthday even though I felt upset, I calmed down and went back to the party. 


That is the story – from my perspective and then hers.

You see the differences?

They matter the most.

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I have much to say about the events of the past few days. About the process by which this monumental piece of legislation was jammed through the House. About how some of those who voted for it admitted they hadn’t even read it. About how none – not a single one – of those who voted for it have any idea what its impact might be without the non-partisan analysis of the CBO. About Congress exempting itself from the changes it is proposing. About the offensive, not to mention premature, celebrations that followed. About the callousness with which the lives of people like my child are being devalued and dismissed.

Yesterday, my Congressman, Joe Kennedy III said it far better than I could.

TrumpCare codifies a worldview that divides America by fate and fortune. A worldview that scapegoats the struggling and suffering and that sees illness as inadequacy. The ultimate test of our country’s character is not the power we give the strong, but the strength we give the weak.

We are better than this.

There is still time to turn it around in the Senate. The CBO score will come out in the next week or two. We will have the information that the House was so desperate to avoid us seeing before the vote. We will be able to have informed conversations. We will talk to our friends and neighbors. We will make our voices heard en masse.

We are better than this.

Statement from The Arc:

Members of the House of Representatives who supported the American Health Care Act voted against their constituents with intellectual and developmental disabilities. We won’t soon forget those who so willingly ignored the pleas of their constituents who rely on the Affordable Care Act and Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. We must call this what it is – an attack on the rights and lives of people with disabilities.

“The federal government will be walking away from a more than 50 year partnership with states when it comes to Medicaid. Deep cuts and radical restructuring will decimate the Medicaid program. With an over $800 billion cut to Medicaid, states will face difficult choices about what people to cut from the program or what services to roll back. Optional services like home and community based services are likely to be cut. Lives will be lost when people are unable to access the health care and community supports they need.

“The plan that passed the House today is insufficient to keep people with disabilities insured or to support anyone with complex medical needs. If signed into law as currently written, this bill will result in people with disabilities and their family members losing health coverage in the private insurance market and in Medicaid. Coverage also becomes unaffordable as people with pre-existing conditions lose protections against higher premiums.   Those lucky enough to retain their coverage will find that some of the services they need – Essential Health Benefits – are no longer available.  And Medicaid funded long term supports and services, which help people live independently and be included in their communities, will be even scarcer as waiting lists for services will grow all across the country.  Some may end up living in nursing homes and institutions because community services are no longer available.

“The American Health Care Act shows callous and dangerous disregard for the wellbeing of people with disabilities and their families and erases decades of progress.  Now we turn to the Senate, our last line of defense. We intend to work with Senators on both sides of the aisle to oppose this harmful legislation. We continue to encourage disability advocates across the country to reach out to their Senators to voice their concern about this bill.”

Statement from ASAN, the Autistic Self Advocacy Network:

The Autistic Self Advocacy Network (ASAN) condemns today’s vote by the House of Representatives to pass the American Health Care Act (AHCA). The AHCA, if passed by the Senate, would slash Medicaid supports for Autistic adults and others with disabilities. It would also make health insurance unaffordable for millions of Americans with pre-existing health conditions, including autism.

No amount of backroom wheeling and dealing has changed the fact that, like earlier versions, this version of the AHCA would eliminate the federal government’s commitment to pay its fair share of the costs of the Medicaid program. This would lead to $880 billion less in federal funding for Medicaid programs over the next ten years. 10 million Americans with disabilities, including autistic children and adults, depend on Medicaid for basic health coverage. Medicaid also provides in-home supports to millions of Americans with disabilities who would otherwise be forced to move to an institution. These devastating cuts to Medicaid mean that states will be forced to slash Medicaid coverage, especially coverage for the long-term services and supports that allow us to remain in the community.

The AHCA would also allow health insurance companies to impose dramatic price hikes for people with pre-existing conditions, such as autism and other diagnoses associated with autism  like psychiatric disabilities and epilepsy. States could also chose to let insurers charge more for or stop covering essential health benefits, like emergency room coverage, preventative care, or speech and occupational therapy–services people with disabilities depend on to live good lives. Those who cannot afford these increased premiums will be forced into separate “high-risk pools,” even though high risk pools have never been able to provide adequate coverage at affordable rates for people with disabilities. This bill will devastate millions of Americans, including the disability community and including autistic people across the country. It must be stopped.

There is no way to “fix” these fundamental problems with the AHCA. As ASAN has long said, any replacement to the Affordable Care Act must increase access to health care–not take away coverage for 24 million people, strip away protections for people with pre-existing conditions, and destroy Medicaid. We therefore urge the Senate to reject the AHCA and work with advocates on a real plan to improve our health care system.

Statement from AARP:

We are steadfastly opposed to the American Health Care Act, which passed in the U.S. House of Representatives today.

This deeply flawed health bill will put an Age Tax on us as we age, harming millions of American families with health insurance, forcing many to lose coverage or pay thousands of dollars more for health care. In addition, the bill now puts at risk the 25 million older adults with pre-existing conditions, such as cancer and diabetes, who would likely find health care unaffordable or unavailable to them.

Statement from the AMA

“The bill passed by the House today will result in millions of Americans losing access to quality, affordable health insurance and those with pre-existing health conditions face the possibility of going back to the time when insurers could charge them premiums that made access to coverage out of the question.

The AMA urges the Senate and the Administration to work with physician, patient, hospital and other provider groups to craft bipartisan solutions so all American families can access affordable and meaningful coverage, while preserving the safety net for vulnerable populations.”


Vox – Who will be most hurt by the bill

NPR – What’s in the bill

CBS – What’s in the bill

The Hill – What we don’t know

Consumer Reports – Got a Pre-Existing Condition? Your Premium Could Rise Sharply Under New GOP Plan

A list of pre-existing conditions 

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Image is a photo of Besty DeVos at her Senate Confirmation hearing yesterday. 

Just two days ago, in celebrating the life and legacy of Reverend Dr. Martin Luther King, I shared one of his many oft-recited quotes here.

History will have to record that the greatest tragedy of this period of social transition was not the strident clamor of the bad people, but the appalling silence of the good people.

Today, I picked up the phone and called Washington.

I called my state’s senators. And then I kept dialing.

I called every single senator on the Senate HELP (Health, Education, Labor & Pensions) Committee. I pleaded with them to block the confirmation of Betsy DeVos as Secretary of Education. My plea was less articulate than I’d hoped. It was emotional. It was urgent. I found myself shaking. In the middle of one call, I had to wipe away tears before I could continue.

Because I’d seen this:

FNN: TIM KAINE Questions Betsy Devos For Secretary of Education - YouTube

And this ..

DeVos Refuses to Answer Senator Hassan's Question on Protecting Students with Disabilities - YouTube

Because I’d seen every one of these and couldn’t agree more that the whole thing was pretty much an unmitigated disaster.

Because I couldn’t help but nod like a bobble head in the rear window of a car on a dirt country road as I read this and this.

Because I know what’s possible when we protect, include, and value ALL children and I’ve seen what happens when we don’t.

So I picked up the phone and I dialed. This was basically what I said, twenty-four times.

I’m calling to implore the senator to everything in his / her power to block the confirmation of Betsy DeVos as secretary of education.

Having watched the hearing I was appalled by her lack of knowledge of the most basic laws, especially IDEA, which she so cavalierly and patently incorrectly stated was an issue for the states to discuss. While I’m all for local control there are times in which federal protection is simply vital.

I have an autistic daughter who would be nowhere without IDEA and its insistence upon her access to a free and appropriate education with her peers, where she belongs and where she has thrived.

I strongly believe in reforming and improving our nations public schools rather than dismantling the entire system as Ms Devos has advocated.

Given her utter lack of experience, her inability or refusal to answer direct, basic questions about her own ideology and any plans she may have to implement it, her painful ignorance of and refusal to commit to enforcing the laws already in place, and her total disregard for the dire consequences of her radical proposals, it is imperative that the senator help to block her confirmation.

Because too many lives hang in the balance.

Below is the list of all Senators on the Senate HELP Committee, who heard testimony from Secretary of Education nominee Betsy DeVos. If you don’t like what you see when you watch, call them. Feel free to use my words or come up with your own. But please, I”m begging … don’t be silent. 

Alexander, Lamar (TN),Chairman
Phone: (202) 224-4944

Enzi, Michael B. (WY)
Phone: (202) 224-3424

Burr, Richard (NC)
(202) 224-3154

Isakson, Johnny (GA)
(202) 224 – 3643

Paul, Rand (KY)

Collins, Susan M. (ME)
(202) 224 – 2523

Cassidy, Bill (LA)
(202) 224-5824

Young, Todd (IN)
(202) 224 – 5623

Hatch, Orrin G. (UT)
(202) 224-5251

Roberts, Pat (KS)

Murkowski, Lisa (AK)

Scott, Tim (SC)
(202) 224-6121

Murray, Patty (WA), Ranking Member
(202) 224-2621

Sanders, Bernard (VT)
(202) 224-5141

Casey, Robert P. (PA)
(202) 224-6324

Franken, Al (MN)
(202) 224-5641

Bennet, Michael F. (CO)

Whitehouse, Sheldon (RI)
(202) 224-2921

Baldwin, Tammy (WI)
(202) 224-5653

Murphy, Christopher (CT)
(202) 224-4041

Warren, Elizabeth (MA)
(202) 224-4543

Kaine, Tim (VA)
(202) 224-4024

Hassan, Margaret Wood (NH)
(202) 224-3324

Thank you.

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Today, as we honor the life and legacy of the Reverend Dr. Martin Luther King Jr., we read his words in a context that feels in many ways to be no less fraught, no less complicated, no less urgent than the time in which he first delivered them.

History will have to record that the greatest tragedy of this period of social transition was not the strident clamor of the bad people, but the appalling silence of the good people.

Today, as some in the highest seats of power seek not progress but provocation, not the cementing of equality but the rolling back of hard-won rights, not unification but the scapegoating on which their platform so desperately depends, the Reverend’s words are not some dusty relics of our nation’s past, but rather a testimony to our present.

Our nonviolent direct-action program has as its objective not the creation of tensions, but the surfacing of tensions already present. We set out to precipitate a crisis situation that must open the door to negotiation. I am not afraid of the words “crisis” and “tension.” I deeply oppose violence, but constructive crisis and tension are necessary for growth. Innate in all life, and all growth, is tension. Only in death is there an absence of tension. To cure injustices, you must expose them before the light of human conscience and the bar of public opinion, regardless of whatever tensions that exposure generates.

I have read those words more times than I can count over the years and yet I find myself reading them again and again and yet again still. Dr. King was murdered before many of us were born and yet still he calls us to action: to introspection, to justice, to the nonviolent resistance of retrogression and the unwavering insistence upon forward growth.

As much as I deplore violence, there is one evil that is worse than violence, and that’s cowardice.

In an age when retribution is as immediate as it is devastating, even the smallest acts of protest can be daunting.

He who passively accepts evil is as much involved in it as he who helps to perpetrate it. He who accepts evil without protesting against it is really cooperating with it.

And yet he calls us still. Because his words are not some dusty relics of our nation’s past, but rather a testimony to our present.

The time is always right to do what is right.

Reverend Dr. Martin Luther King Jr.

January, 1929 – April, 1968

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