Both Dean Heller of Nevada and Susan Collins of Maine have recently announced that they will not support the bill! If you have a Republican Senator please call them everyday this week until the vote to ask them to vote NO on the AHCA, and you’re welcome to use our story! If you’re from Alaska, West Virginia, Maine, Nevada, Arizona, Colorado, Ohio, Pennsylvania, Louisiana, or Arkansas, these are key states where your senators remain undecided and you should definitely call and there are daily call scripts for those states available here. If you have Democratic Senators, make sure they are speaking out against the bill and willing to use any means to block it. But the best thing you can do is reach out to friends and family in the ten states above and ask them to call!
One of the beauties of this blog is that I don’t know all of you personally but I feel like I’ve come to know you over the years. And I’d love to hear from you. Please leave a comment in the comment section and let me know where you’re from and who you’ve called.
I remember the box that the nurse from Medicaid checked when she came to evaluate Lucia–it read something like “qualifies for institutionalized level of nursing/medical care.” She’d been so empathic and caring, so visibly at ease seeing and talking about a child that was on a feeding tube and yet puked the contents of her stomach uncontrollably while we talked in my dining room. But when she left my heart skipped a beat–did she check that box because she thought Lucia belonged in an institution? I thought she’d been there to process Lucia’s Medicaid. Sure no one was going to take our child away?
Looking back I don’t remember being particularly fazed by the severity of Lucia’s medical needs. Growing up with my own health problems, a twin sister with asthma and respiratory problems, and a mother with multiple sclerosis (who is also a nurse!), I think I learned that while health challenges were part of life they didn’t prevent a person from being a person. We had good medical care and my parents were able to provide what we needed to thrive. Therefore, for my husband and I, when it came to Lucia, so much of that first year and a half was just wading through the newness of parenthood alongside the advent of seizures, abnormal MRIs, and feeding tubes without much distinction. We were coping and surviving with rare moments that glare through the blur with clarity and poignancy–the long nights of shrieking as we weaned our poor baby off of narcotics; the morning she woke up with her head and her eyes glued permanently to that the left and because she had special needs the ER doctors rather dismissively sent us home saying she probably had a cold; or the night a month later when I nursed her for the very last time in the glimmer of hospital monitors because that onset of brain damage (what had really sent us to the ER) had caused her to lose the ability to feed by mouth.
Yet those moments, as ingrained as they are in my memory, did not so much smack of worry and fear as heartache and pain. You see, by God’s grace my husband and I are not much of worriers. We’re eminently logical and practical people, people who sort of spring into action and competency when faced with crisis–as pained and bleary-eyed as any first-time parents may have been. We found this way to treasure those moments, laced with sorrow, with our precious child, precisely because the future was always so unknown and held in suspense. And when Lucia’s prognosis pointed to death in early childhood, it only made worry that much more the enemy of the present. We had the present. The luxury of worry was fleeting.
I’m sick that although my child is now even miraculously taking small spoonfuls of puree at school by mouth (go Lucia!), I’m wondering whether her special needs public school and feeding therapy will be on the chopping block next. I rejoice that Lucia’s God-given companion, her nurse Sylvia, has been with us for over a year and a half, but I worry how I will work when Lucia’s Medicaid gets cut, how Lucia will ride the bus to school or eat through her tube without Sylvia, or how my husband and I will ever sleep without a nurse in our house to monitor Lucia’s seizures, vitals, oxygen levels, feeds, and neurological pain. I’m worried because in the back of my mind I wonder if someday in the absence of Medicaid I may not longer be able to care for my own child, this precious, precious gift, because I actually can’t do it without in-home nurses and feeding pumps and pulse ox monitors and special education and therapy and seizure medication and durable medical equipment–all things that Medicaid provides.
Some friends along the way have insinuated that I’m being a bit dramatic here–that perhaps I should give Donald Trump, the Republicans, the AHCA, the budget negotiations more of a chance–perhaps I shouldn’t worry so much. Perhaps, according to them, I have nothing to worry about. But I can tell you this much: I didn’t worry for Lucia’s life or ours initially because those were so firmly and are so firmly in God’s hands. The rarity of her genetic disease, the onset of her brain damage and consequences, and the wisdom and beauty that God had in making her are so simply beyond me. But this politics and justice and being human stuff? God’s charged us with that. God’s charged us with preserving and caring for human life–all human lives–that’s ours to do. And as long as people like my daughter are cast aside in some human mishandling of God’s charge to God’s stewards, I reserve the right to be very angry. I reserve the right to be worried. And I reserve the right to fight like hell to preserve her life, like any of you would your own child’s, and my ability as a parent to care for her in my own home.
You can tell me not to worry, but it makes me feel as though you are not really listening as I tell my story. I learned how to live in the present a long, long time ago, and I’m telling you it’s become a downright inhospitable place for people with disabilities. It’s a present deeply in need of a change. Won’t you join me in being that change so none of us need worry about our children’s future?
However, as a scholar of disability and a parent of a child with disabilities, these headlines and their rhetoric sounded all the alarm bells. Surely a unified public that holds our erratic and impulsive president accountable to for his actions is to be welcomed–but not at the expense of the dignity of people with disabilities in America. Indeed, what is hardly subtle, but seemingly unnoticeable to readers of headlines like these and their content is the blatant criminalization and marginalization of people with disabilities in them. For instance, just try replacing “disability” in Will’s headline with any other identity, ethnicity, race, or sexual orientation, and suddenly Trump’s main reason to be feared—his presumed disability—reveals a startling prejudice toward difference in America.
Even if Will is onto something here in observing Trump’s inabilities, I suggest that he has inadvertently used disability as a vehicle to make the dangerous even more insidious, corrupt, and devoid of rehabilitation by appealing to some seemingly innate, suspiciously subhuman defect. Such rhetoric imperceptibly recycles previous tropes in the media that cast people with mental illness as unusually aggressive and pin gun violence on their disproportionate crimes—stereotypes that do not hold up statistically and are vestiges of longstanding cultural prejudices toward people who are “mad” or “insane.” The headline that highlights Will’s own words, “George Will: Trump has a ‘disability,’ is ‘uniquely unfit’” goes beyond these associations to imply that people with disabilities are somehow unfit to serve in office by virtue of their mental, physical, or emotional differences. The problem with Will’s tactic here and with rampant allegations that Trump has a disability are that they do nothing to cross this divide between able-bodied and disabled citizens, decry inaccurate stereotypes or effect genuine understanding. Rather disability remains but a vehicle and a scapegoat for our fears about Donald Trump or more disturbingly, a scapegoat for our fears about humanity.
Yet, perhaps the greatest issue with Will’s column is that by criminalizing people with disabilities, he not only perpetuates their stigma, but also draws attention away from the very discrimination that Trump himself, his cabinet, and his commitment to repealing the Affordable Care Act have reinforced against people with disabilities in America today. Who can forget the moment Trump cruelly mocked a reporter with cerebral palsy during his campaign, only to claim that it never actually happened? In her hearing, Trump’s Secretary of Education, Betsy DeVos failed to acknowledge the national purview of the IDEA, a piece of legislation that protects and guarantees education for students with disabilities; his Attorney General Jeff Sessions has also made derisive and deriding comments about children with disabilities. Finally, the GOP American Health Care Act that President Trump and Republicans just cheered as it passed through the House levels $880 billion dollars in cuts to Medicaid over the next ten years that would deprive people of disabilities, namely my daughter, from important medical, educational, and accessibility services. While George Will decries Trump’s dangerous disability and readers clamor to dangerously speculate themselves, these are the real yet hidden dangers of a Trump presidency for people with disabilities.
Meanwhile a month ago before the original version of the AHCA Bill was set to come before the House, I received a call from my Republican Congressman, Leonard Lance (NJ-7). When we hit connection issues, our call dropping nearly four or five times, he called me back again and again. When he finally got me, he took over fifteen minutes to get to know me as a pastor, a professor and especially a mother, taking a keen interest in my daughter who is thriving through a Managed Long-Term Special Services program (MLTSS) afforded to her through Medicaid. He told me one of the main reasons he was voting against the bill was to protect that program, as well as protect people on the Medicaid expansion. He understands and made clear that poor people and people with disabilities are the very people that should not be denied healthcare, no matter the changes Republicans or Democrats want to make. Last week, he kept his word and voted against the House Bill that passed; he didn’t vote with his party—he voted with people like my daughter and me.
I certainly agree with Will and his readers that real life bipartisan unity, the likes of which is offered by Lance’s vote and his positions on people with disabilities, is even more critical in the face of the House passage of the abhorrent AHCA, Trump’s most recent egregious firing of FBI Director James Comey, and the lack concern he shows for rule of law or the cares of his constituents. But if the biggest divides in this country remain not partisan but based upon fear of disability and its inhumanity, then we are in much more dire straits that I thought. I know far too well that when people ridicule Medicaid, they don’t think about kids like my daughter. When they see her, they often look past her, and to many, she may be a strain on taxpayers dollars, a basket full of preexisting conditions. But as a Democratic Congressman, Joe Kennedy (MA-4) so eloquently put it, “among the most basic human truths” is this unifying vulnerability of the human condition.
If we are to move forward, we must have the conviction to confront Trump’s ignorance, prejudice, and bigotry on the basis of this shared humanity, not on the backs of people with disabilities. We must make it clear that Trump is uniquely dangerous–but more precisely because of the way he has continually undermined the very humanity of people with disabilities.
“No parent wants their child to be different,” she said passionately yet nonchalantly, looking innocently into the camera in this week’s premiere episode of a new season of the reality tv show, Little People, Big World. She was talking about the possibility that their baby would be born with dwarfism, while meanwhile her husband, a little person, shifted uncomfortably in his chair, trying to parse the divide, forgive her somehow for saying that his very difference, one she presumably accepted and loved, was so naturally undesired, bad–something to be feared.
I don’t mean to pick on her specifically.
I think many of us bristle at the presentation of disease and disability as unwanted variations and aberrations in nature’s otherwise rather painstaking track record for miracles, successes, and beauty. But what if I told you there were all sorts of dormant mutations in your own genetic material? What if I told you that nature “makes mistakes” all the time and it’s just that some of these variations are visible while others are less so? What if I told you that Lucia, my own daughter, was the result of one of those presumed “mistakes,” so rare, so different, yet so deeply loved and wanted? Might that change your mindset that difference is always something to be naturally avoided or eschewed at all costs?
Underneath the reality tv star’s seemingly innocent words ran a subtle, yet deep vein of privilege and conceit. Anyone who cared would prevent difference if they could, she presumed. But different to whom, I wondered. Black kids are born into a pretty inhospitable world, but it’s not their blackness that’s a problem but the normative white culture that devalues their lives. Gay and transgender kids aren’t really all that different than any other kids and yet their difference is targeted as an assault on heteronormative culture that reproduces itself through fear and exclusion. As long as difference remains the much feared, undesirable cultural alternative to healthy and white and straight and male, we desecrate the true variety and value of human life that God has made because we play God ourselves–even if it is ever so subtly with our wishing away of certain babies like mine.
And yet, this world, this country specifically, is becoming extremely inhospitable toward my daughter month by month. As a parent of a child with special needs, I want to live in a country that accepts and loves and cherishes children who are different– not with asterisks or snide comments or fearful glances or knowing pity or minimal health care or scant education–but full stop. Don’t tell me how expensive my child’s medical expenses are or how arduous her special education is, how different her needs are from a typical child, how wildly incompatible they are with this cutthroat ability-obssessed culture we live in, because I really do know. I know this isn’t easy because I’m living it alongside her.
But I made peace with Lucia’s challenges years ago; we’ve gone on living this incredibly full life and we’ve been buoyed by our church, friends, family, and the incredible array of services NJ Medicaid provides. Our family has found refuge in a state that truly values her life, but for how long? How long will you continue to live by the conceit or the privilege that your life is somehow any different from ours? How long will you fear rather than embrace difference, support legislation that carves us off from one another by our differences, asserts hierarchy in nature when you know not what mutation, future, or controversy may come–legislation that makes health the luxury and priority of the rich?
Control over the progression of my daughter’s disease is a true illusion, but the choice to value her life and give her every chance possible–that’s firmly in your hands and mine.
Thanks to so many of you who called, wrote letters, and spoke to your members of Congress, I feel like I can breathe again for the first time in weeks. I feel hope and lightness and strength, and I can’t thank you enough!
But most of all, I feel like the outpouring of support reminds me that while I can’t take it for granted and the fight to protect people with disabilities, the poor, the elderly, and the most vulnerable in our country is far from over, I hear that the voices who value those lives in this country have gotten louder, more expressive, and more proud. A few days ago, the burden that I felt to make my daughter’s story and her value known felt very singular and heavy. But what’s so sweet about hope is that burdens are lifted when responsibility and love and care become shared.
Thank you so much for sharing our burden, but most of all, thank you for realizing that Lucia’s life has never been and doesn’t deserve to present a burden to her or to us or to any family who just wants their child to grow and thrive. Let’s keep fighting so that we can all keep growing by living in a society that values so many different kinds of people and deems them all worthy of health, education, life, and love.
Onward, my friends. And thank you for renewing my hope!
Tears came to my eyes and my voice cracked as I told my mom over the phone today,
“It was only recently that we found a way to stop worrying that Lucia would die and decided to love her so fiercely and just live life together. And now we’re afraid everyday that she might lose the benefits that make her life so wonderful.”
How can we when our private employer insurance granted through one of the most prestigious universities in the world denies all the things she needs from in-home nursing services to wheelchairs to surgeries and nearly everything in between?
We’ve learned the hard way that private insurance companies will never cover Lucia’s needs because they’re deemed too expensive, too rare, too disadvantageous. So when Lucia was 6 months old, I began filling out paperwork for New Jersey state Medicaid, a process so complicated I could hardly navigate it, even though I have a Ph.D., a Masters, and a Bachelor’s degree. For 6 months we paid out of pocket for all the things that our employer plan wouldn’t cover and we racked up nearly $10,000 in medical expenses.
But things started to shift when we got the first person from the state’s Early Intervention program into our home; she took one look at Lucia shrieking in pain and me helpless to comfort my child and told me, “You shouldn’t have to do this alone. We can help.” And I will never forget those words. 6 months later when Lucia got onto the NJ State Medicaid MLTSS program (Managed Long Term Special Services for kids with outstanding medical needs and disabilities), everything changed. Suddenly, our secondary insurance through the state stepped in to pick up the tab on the myriad of services our private insurance denied. Those giant insurance bills and many of our worries about how we could pay and support her future melted away.
We felt that we had found an incredible safety net in the state of New Jersey. We bought a house here in a school district well-known for going above and beyond for supporting kids with special needs. And Lucia has been taking the bus to a wonderful special needs school; the social worker in our district has been undyingly supportive of our requests. The school district is willing to foot the bill for those bus trips, special equipment, and extra support in the classroom. And Lucia comes home from school everyday babbling (literally babbling) and smiling and laughing because she couldn’t be happier.
But I’m begging you to not take any of this (and this is really what makes America great) for granted either. Indeed, I am so thankful to live in a country where I can speak out and where my voice can make a difference. I have spoken to my member of Congress; he’s a Republican, but he’s willing to fight to protect both the NJ MLTSS program and the Medicaid expansion because he knows how much they matter to families like ours. And I’m thrilled. I have hope, but I am also stressed. Living and loving a child whose circumstances are so uncertain has never been easy. And doing so now when you feel like you have to fight for the very programs that have made such a difference is something I barely have time for in between all those medical appointments and insurance calls and nursing schedules and therapy visits.
But, you guessed it–I don’t take any of that for granted either.
The first year I was teaching in the writing program Lucia was diagnosed with Aicardi-Goutieres Syndrome just a month after her first birthday. I remember that despite the cake and the guests, there was a somberness to that first birthday. Lucia couldn’t eat the cake we made, because she’d just begun feeding through a tube a few months prior. We worried that she’d spit up violently during the party like she often did or that she’d scream in pain most of the time. But mostly we felt intent to celebrate because we didn’t know how many birthdays we’d have and we were desperate and determined to have that first one even if it wasn’t perfect.
Later that summer I began to wonder what God was doing.
I’d spent years doing research in China studying foster families who raise children with disabilities; disability in China had become so unexpectedly a professional, academic interest. And then we had our own child with special needs and it all felt a bit too close for comfort. People wondered about the order of things: surely you planned to study disability because of your own child? No, it was the other way around? They’d shake their heads disconcertedly, unnerved, perplexed. It felt reductive to presume God had been equipping us in China to be Lucia’s parents or a bit simplistic and crass to pronounce that Lucia’s disability and our relationships with families in China had all been a part of God’s plan, but it was also hard not to see it that way either.
But somewhere along the way, I began to embrace what God was doing even if I didn’t fully understand it. I began to dream that summer about a writing course about disability, but would students want to take such a course, I wondered. When we develop our writing courses our directors always encourage us to get inside the minds of 18 year olds arriving at college, and so the most popular classes are on madness, New York, extra-terrestrials, and film. Would a course on disability really be something freshman students would care about?
I’m not sure how popular my course has been, but every semester, two groups of twelve students walk in the door. Many of them come because they have a family member who has a disability, and they want to understand and talk about it. Some of them are just curious. I’m sure for several of them, my course wasn’t their first choice and they just ended up there by chance.
But I try to make the most of that chance.
The course considers disability as a form of diversity, a form of difference, and challenges the students to think beyond what they thought they knew about disability to reconsider how disability can teach us more about what it means to be human. At an elite, ivy league university, the thought that people with intellectual disabilities might be insightful when it comes to our knowledge about humanity it a particularly challenging, counter-cultural thought. For some of my students that dissonance, having a brother back at home who struggles to speak because of his autism, while they are thousands of miles away, toiling for the mere self-improvement of their own mind, is nearly too much to bear. During a routine writing conference, one such student broke down and told me, “I just had to take your course. When I look at all the ones on campus, it is the only one that seems to matter.”
I am not a miracle worker, but I do try to offer those students shelter and companionship within the world of academia. I know just how inhospitable such a world can be to the daughter I love most, the daughter who has taught me more about myself, life, and God than nearly any other human being on the planet–and yet to so many, she is broken, disabled, lacking. Together with twenty-four students each semester in this small, windowless classroom, we encounter just that kind of prejudice and exclusion toward people with disabilities, and I invite them to see otherwise.
What happens each semester is powerful.
Not only are there brave, open-minded students who have little contact with people with disabilities but come because they want to learn, but there are students with disabilities in my classroom who find that they are not alone and they are valued. There are students who leave impassioned to work with and learn more about people with disabilities even though they came in somewhat hesitant.
And at the end of the semester, when I have the students write narratives and Op-Eds about what they’ve learned about disability, I am overwhelmed. At the end of a semester of rigorous academic writing, they are invited to share their hearts, and I sit there with my coffee and my computer, humbled and honored to be invited into their beautiful, painful lives. So many students have written about how religious leaders have been so limited in their understanding of disability, hurting their family members, denying their humanity. So many have written about their own struggles with learning disabilities or mental illness that they’ve often kept to themselves on a campus that doesn’t have time for any inkling of weakness. Still others find the language of disability and difference a provocative opening to reconsider their experiences of race, class, gender, or body issues.
Every semester these disability narratives blow me away.
I learn so much from my students. Indeed, it was with that first class that I began to write about my own experiences–“I’m Not Sorry” was my disability narrative that I wrote alongside them, because I told them that I couldn’t ask them to be so brave if I wasn’t willing to try, too. These students have made me realize that the collision of my personal and professional life is both a gift and a responsibility. As I read over these narratives this past week, I realized that students leave my classroom better equipped to appreciate what is sacred in people who are different from them. And the hope that welled up in my heart when I read those narratives was distinct and surprising and so thrilling, because these students will resist attempts to belittle those who are different and those with disabilities. I know they will. These students will use their knowledge for good. It is because of these students that I can’t help but find purpose in my life and Lucia’s life; the opportunity to serve them and to grow alongside them is just too precious, too unique.
A few days ago, I snidely posted the following words to my social media account,
“Apparently there’s an inauguration today. Meanwhile, I have rearranged my office for maximum coziness while I get to read the exams where my students explore what they’ve learned about disability and difference over the course of our semester. How’s that for a protest, Mr. Trump? Three semesters (and counting) of students who will value and advocate for people with disabilities: we will make America great with or without you.”
So you see, this class, while it’s not overtly political is a distinct act of resistance in a world that is far too close-minded, cruel, and careless when it comes to the lives of people with disabilities. It’s resistance that comes from knowledge and hope and love. It is the resistance that I choose and that has chosen me. And I will carry on because just a few years removed from Lucia’s first birthday, I no longer question God at all. Rather all I can do is thank God for God’s incredible vision and a life so humble and yet, so grand.
We, like so many other parents across the globe, took our almost three year old to her first political protest on Saturday. And like so many, it was not necessarily the words of the speakers or the size of the protest that mattered so much, but the experience of standing alongside others in that damp, dreary weather and feeling the light and the warmth of knowing we’re not alone in the fight for the rights and dignity of all people in this country.
But when another pastor came up with his family to tell us that he had first started to take his now teenage son to protests when he was about Lucia’s age I have to admit that I was a little dismissive. Lucia would probably not be conscious of this protest anymore than ones she might attend in the future–in other words, I was emphatically aware of the cavernous difference between his able-bodied son and my disabled daughter, of his typical family and my not so typical one. Minutes later an elderly woman wanted to present Lucia was the paper crane she’d been fashioning while she stood beside us.
“Kids must be so bored at these things,” she whispered. “Perhaps she’d like something to play with.”
“Oh, well she can’t really use her arms,” I replied dryly.
“Well, can she see?” she persisted.
“No, not really,” I replied again, rather impatiently.
“But she can feel,” I finally acquiesced, flapping the tiny wings of the little bird against Lucia’s cheek to the woman’s contentment.
Even then, despite this woman’s resolute patience, I felt a pang of ambivalence. I perceived her persistence to be a reflection of her own desire to give her gift, whether or not it might be appropriate to give or whether Lucia could really receive of it. Despite the myriad of people who encircled us to tell us that they liked our “#disabled lives matter” sign and smile at our toddler with special needs, I realized how possible it was to feel disconnected to the 7500 people with which we stood.
Nonetheless, not only the Trenton march, but the hundreds across the globe, especially the march on Washington, were an enormous success, and on Sunday as we stood in the church hallway, the other pastor and I chatted excitedly about what it feels like to be part of history. I remarked on how deeply moved I was by all the supportive responses to the piece I published on Thursday on this blog and Friday in the Huffington Post and how emotional it was when friends texted me photos of themselves marching in name for our daughter, Lucia, and disabled people across the country. But then again, almost before the words were out of my mouth, I realized I didn’t like how they sounded: I realized I was being dismissive again. I said something like how loved we felt, how Lucia had been so happy all day, but of course, she didn’t understand much of what really was going on, although it still meant something to us, to her parents.
“Oh, I don’t know,” my colleague replied graciously and carefully with something like, “I think love is love. I’m not sure we really know how people love, how it works, or how they receive it, but I think we can feel it. I think everyone can feel it.”
I swallowed, a big lump rising in my throat, and I thought about the pastor and his kids and the woman with the paper crane. I thought about the 7500 people marching in Trenton and millions of others across the globe. I thought about the words I’d written last week, and I realized that in the midst of calling for Lucia’s rights and for real love for her, I, too, have the ability to silence her.
It’s not up to me to decide what’s love or whether or how Lucia receives it. I realize that as much as I understand the reality of my daughter’s differences, I am not in a position to fathom what love really feels like to her, how she receives it, and how she experiences it. Those are my own limitations, and it’s not for me to constantly assert her differences when other people see common ground, or to presume that there’s a right or a wrong way to love her. I realize that perfect love isn’t about the most appropriate gift or words or gesture, but it’s about the desire to engage, to stand with, and to keep trying, even when the caverns seem massive and deep.
So with a humble heart and a contrite spirit, I realize just how tremendous and miraculous your outpouring of support has been, how deeply thankful I am to all of you not only because you’re fighting the good fight, you’ve got my girl’s back, and you’re doing everything you can to be a voice for justice, but because you remind me and are teaching me everyday about what love really means. You’re teaching me what it really means to let go and let Lucia love and be loved by you. And it’s not necessarily how I would have imagined it.
But thank God for that.
Thank God that despite our limitations, God somehow uses people to enable love to break through and remind us that God is love–that perfect love looks like undeniable kinship between so seemingly different families, paper cranes, spirited marches, letters to Congress, Lucia’s happiness, and so much in between.
Love is love and God is love and that’s why, despite our best (and flawed) human efforts, we’re never really alone.
P.s. The Betsy DeVos vote has been postponed until Jan. 31 so that gives you a week to call your Senator! See my previous post post-script (hehe) on why DeVos is bad on disability rights and how to call.
P.p.s. The Jeff Sessions vote could be as early as tomorrow! Call your Senator now to oppose and read this article to see why he’s bad for disability rights, too.
P.p.p.s. Letter writing is effective! Learn how here and please write to your Congress-people (you have one rep and three senators) asking them to protect state and federal Medicaid for families with disabilities!
I’ve noticed that when I write posts about our life with Lucia and I tell you about our family’s journey in getting to know, understand, and love our child with disabilities, we are met with such love, encouragement, and support. These posts have been such a deep point of connection for me with all of you because they show me how much you value children like Lucia, who have special needs. They encourage me that you see value in difference and that you understand some of our challenges, delight, and struggle, and this is no small thing.
So with sincere confusion and heartache and much trepidation, I want to ask, friends, why the silence when it comes to these issues of justice and provision and daily life for people with disabilities? Is it because we remain deeply divided in this country and that divide extends to the question of how best to care for, empower, and support people with disabilities? I guess I understand that. We are divided in this country about so many things.
But I want to tell you something–the main reason I began writing Lucia’s story this past year is because I realized that it was so worthy of being shared and that she has so much to teach us. But somewhere along the way, I also realized that when I write about my daughter with special needs on this blog, I do so in an ardent effort to bridge that very divide between us. In fact, I write Lucia’s story (sometimes gingerly and ambivalently) precisely because she doesn’t and she may never have the words to tell it herself. I write Lucia’s story because so many people with disabilities don’t have the hands and feet or the energy to call or march or lobby or fight for their own rights. Of course many of them do, and that is why we have federal legislation like the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) because so many people with disabilities worked so hard to ensure that such persons are not denied basic rights to citizenship, employment, and education, but the ADA came along only in the 1990s and the IDEA is still imperfect and under threat even today.
But these are all best case scenarios–yes, that scenario in which you must quit your job but you get some benefits and you get paid minimum wage to care for your medically fragile child in your home, or our scenario where you have such great benefits but you’re literally trapped in the state, you can’t consider other jobs outside your state or a home closer to family because those states don’t have coverage–those are the best case scenarios. The worst cases are states that have so substantially cut their Early Intervention or Medicaid programs that families can’t afford these very expensive services that their kids need to grow, or worse, survive. The worst case scenarios are ones where children still sit idle in classrooms with no appropriate or adaptive equipment because states don’t have the necessary funding or won’t put it toward the challenges of kids with special needs. The worst case scenario is a country that becomes so divided that we fail to care for these kids and their families at both the federal and state level, a country wherein we’ve forgotten their rights and thus denied their humanity.
So when you hear politicians threatening to cut Medicaid and deny federal laws that protect children with special needs rights to education, will you remember our family and other families like ours and resolve to stand with us and not be silent? Will you realize and acknowledge that so many families who care for people with disabilities are currently scraping by with so little (nobody gets rich off of disability), and cuts to federal and state programming make it hard for their parents to work, hard for their kids to go to good schools, and hard for such children to get good medical care, supportive seating that helps them go places, and braces to walk, run, and stand? (There is still no comprehensive mandate across this country to enable these families to live sustainable lives–we’ve left that to the states and so many families are living the worst case scenarios everyday.)
These are the things I’ve perhaps neglected to tell as a part of Lucia’s story, because they’re personal and painful and arduous and inglorious but not any less true. But if I can’t humble myself to speak these truths, and if this part of being different goes unknown in this country, then I’ve become complicit in this silence as well.
So thank you from the bottom of my heart for loving our family, for supporting all of us, and for sharing our story. But most all, thank you for being part of a less raucous but no less valid and valiant movement in this country to seek understanding across our differences. Thank you for considering this challenge to advocacy–the charge to love us by lifting your voice on behalf of my family and others and to seek the best for all people, especially people with special needs. When you think about it, beyond Donald Trump’s mockery and Hillary Clinton’s platform, people with disabilities were again surprisingly absent from all this political jarring and sparring and posturing: where was the outcry against police violence toward people with disabilities (#criplivesmatter), or the righteous indignation over the exclusion of disabled people’s rights from the progressive Women’s March platform?
Let’s change this country, friends. They’re going after kids like mine, and it’s not right.
Let’s break the silence. One phone call, one story, many voices, together.
P.s. If you’d like to get started today,
Please call your Senator and oppose the appointment of Betsy DeVos for Secretary of Education and Jeff Sessions for Attorney General. You can read here and here why we don’t trust them when it comes to protecting our children with disabilities.
This season I’ve been intentionally quiet, quiet mostly in the mornings but also quiet on the blog. This Advent, I’ve tapped back into my practice of Lectio and Centering Prayer. I’ve been reading the prophetic scriptures from Isaiah and the journey to Bethlehem in Luke as the Syrian city of Aleppo crumbles, lives are lost, and great fear reigns throughout our world.
I haven’t known how to respond to all the darkness, have you?
I should speak out, I think, say something like Isaiah, the prophet, reminding us how to follow a God who is not of this world, a king who is not violent, but gentle and humble and an outsider.
Is silence surrender in the face of such great evil, especially in a season that proclaims resounding joy, reconciliation, and peace?
I strive to work for justice in fits and spurts, donating, signing petitions, calling my congresspeople, but in the mean time, in a faraway land from where our savior was born, I hope that my silence meets God’s faithfulness. You see, what I have always found so powerful about centering prayer is that I’m not doing anything–and that’s the point. Because if prayer is just one more thing that we do, let alone one more thing that I presume to muster of my own wisdom and accord, then it is anything but a holy offering or a right relationship to God.
And so as we wonder how to respond, I wonder, whether as always, if it isn’t less about us and more about God–God’s saving action in the world? I am patient in this season to listen but not to listen without responsibility. I listen and trust and charge God with all God is always doing to offering healing, respite, and reprieve. And I wait for God to give me the words, the actions, and the steps to be an instrument of peace this Advent season.
If you’re interested, there are over 30 posts in the category “Centering Prayer” on the blog.
Here are also a few posts from past Advent reflections and practices:
Finally, I’d be interested in hearing from any of you who are struggling in waiting this season. It strikes me that waiting and silence feel particularly cheap in a season where this so much violence and need. What is God teaching you? Where is God leading you?