Category Archives: justice

Why we cannot make the bipartisan case against Trump on the backs of people with disabilities

In his May 3rd Opinion piece entitled “Trump has a dangerous disability” in The Washington Post, columnist George Will writes, “It is urgent for Americans to think and speak clearly about President Trump’s inability to do either.  This seems to be not a mere disinclination but a disability.  It is not merely the result of intellectual sloth but of an untrained mind bereft of information and married to stratospheric self-confidence.”  Will’s argument and rhetoric struck a seemingly bipartisan and straightforward chord as the piece was widely reposted by conservative and liberals alike—“Trump disabled,” began The Hill’s headline, while The Free Republic, a conservative forum, as well as Black in America, reposted the content; another site summarized, “George Will: Trump has a ‘disability,’ is ‘uniquely unfit.’” 

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.

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Credit: David Hosey, LA Times.

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.  

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My daughter, Lucia, in front of the irises in bloom at our house in New Jersey.  My photo.

 

 

Why I’m grateful my child was born different

“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?

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Image Credit.

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.

The day after legislation that devalues the life of people like my daughter, people who are poor, people who are sick, people who are women, people who are victims of rape, and people who are old passed through the House, I still have the audacity to dream differently.  And I have my daughter to thank for that.  I don’t want to live in a world that she is not in, because I would not know the fullness of what God has given and imagined for human beings.

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.

And God knows, I’m still so very grateful that my child was born different.

*If you want to learn more, read this piece on “5 Things to Watch as GOP Health Bill Moves to the Senate,” and if you want to act on behalf of families like ours and kids like mine, call your Senator and tell them our story!

What I don’t take for granted

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.”

You’ve seen me write about it on this blog countless times–the life so grand that we couldn’t have possibly imagined, a life for which we are never sorry but so deeply grateful. Our daughter, Lucia, who was born with a terminal, genetic disease of the brain, is the greatest gift we’ve ever been given.

But we don’t take that gift for granted.

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.

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Lucia smiling on the porch after a great day at school.  My photo.

But we can’t take that for granted.

A proposal passed by two House committees last week looks to slowly trim over $880 million dollars from Obama’s Medicaid expansion and also cap annual federal payments to state Medicaid programs.  I realize that my daughter is on the traditional Medicaid program and not the expansion under the NJ MLTSS, but here’s what I also know to be true as a parent in state with incredible benefits.  First, those benefits are rare–most states have long waiting lists for such special programming (if they even have it) and so those who benefit may not even be those most in need.  Many of these families are covered, however, under the Medicaid expansion.  Furthermore, only 50% of the funding for the MLTSS program comes from the state of NJ, the other 50% comes from the federal government.  That means cuts would certainly affect NJ’s ability to provide the programs it has in the past.  And finally, in striving to be an advocate for my child, I’m also not taking for granted what’s been given only to us.  ALL children should have the rights to attend free public school that meets their needs, receive services that they need to not only live but thrive, and we are not doing enough in this country for the least of these–and trust me, that’s who’s on Medicaid–kids, people with disabilities, seniors, and people struggling with addiction.

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.  

Please call your representatives and your senators today and tell them you want to protect both the Medicaid expansion and traditional Medicaid for all families who find themselves in need.   For so many families whose lives are already marked by hospitalizations and seizures and circumstances of life and death, let’s not make them marred and complicated and undermined and burdened by insurmountable insurance bills, poor or little access to healthcare, schools that may or may not accept their children, and policies that do not value the lives of their children with special needs.  Tell them it pains you to live in a world where we can’t take for granted that those most in need won’t go without.  Tell them how thankful you are for programs like Medicaid and all that they do.  As Heather Kirn Lanier said so eloquently, “my kid’s doing awesome, and it’s not just because of me.”  

It truly takes a village to raise any child.  Will you be part of our village?  It’s a motley crew for sure, but boy, is it full of unexpected, underserved gifts.

 

 

My resistance

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.

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Lucia’s first birthday party.

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 gully 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.

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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.

Thanks again.

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.

 

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Photo credit.

“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 was possible it was to feel disconnected to the 7500 people with which we stood.

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Protesting at the Trenton Women’s March.  My photo.

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.

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Amy Gabriel of marches in South Jersey.  Photo by Dave Hernandez (Burlington County Times).

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.  

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Our happy smiles on Saturday.  My photo.

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!

Breaking the silence: why I’m asking you to be an advocate for children like mine

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.

But I’ve noticed something else, too.  

I’ve noticed that when I post a video to my Facebook page showing Donald Trump mocking a reporter with a disability or an article that explains some of the challenges people with disabilities face if Medicaid or Obamacare are to be cut, or even an article that questions the President Elect’s secretary of education nominee’s understanding and value for the federal government’s protection of the civil rights of people with disabilities, there is no such outpouring of love and support, no litany of encouraging comments or outcries for justice.  Save for a few courteous likes, in fact, you are mostly silent.

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Photo credit.

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.

There is so much to be done.

We live in New Jersey because when it comes to children with special (medical) needs, the NJ state program is one of the best around.  But we lucked into that with Lucia being born here rather than in say, Indiana or Texas.  And we can’t move out of this state because so few states offer the comprehensive skilled nursing care and Medicaid-sponsored secondary insurance that Lucia’s needs require, and these are the services that allow our child to get the care she needs so both my husband and I can work.  In so many other states where benefits are scant, one parent must stay home, and even when they receive benefits, it is these parents’ hard work that actually saves the state and the federal government hundreds of thousands of dollars a year because it’s way cheaper for parents to care for their kids in their homes than for governments to institutionalize them.

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.)

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Lucia smiling with her father.  My photo.

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.
  • Sign up for news and alerts to fight for disability rights.
  • Talk to a family you know about their struggles and advocate on their behalf.
  • Carry a sign at one of the marches this weekend that makes it clear that you value and support the rights of people with disabilities–let’s make these marches truly progressive and inclusive!

 

 

 

When grief is unpalatable

We’ve spent the last few weeks caring for our daughter who just had surgery.  She was in a fog for about three days from the anesthesia and all the pain killers, and though she had no major complications, we felt like we lost her for five days or so to that medicine-induced haze and the severe pain she experienced intermittently.  Leaving home last weekend and this past Monday to head to work was particularly difficult because she wasn’t fully healed (she still isn’t), and she certainly wasn’t yet herself.

And when people asked well meaning questions I felt most qualified to answer them from my experience–my husband and I were struggling so much with seeing her usual bubbly self all comatose and uncomfortable.  Caring for someone who is in pain is painful.  Despite the seeming wisdom of it, then, when people tried to move past the pain–“but the surgery was successful, right?”  “But she’ll feel better soon,” or even, “Well, of course she’s in pain…”–it made me feel very misunderstood.  It felt like other people were trying to look past the real pain and grief of my experience because it wasn’t very palatable, convenient, or acceptable.  They wanted to resolve my grief for me, but when I came home and found Lucia limp in my husband’s arms or screaming in pain, I felt so alone.

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Lucia and her father cuddling on a Sunday afternoon.  My photo.

Precisely because I was grappling so ungracefully with my own grief these past few weeks, I immediately recognized something similar in my students’ tear-stained faces, slumped shoulders, and speechless, flustering sighs the Wednesday morning after the election.  Truth be told, given my own personal grief, I didn’t quite feel like beholding the grief of another.  But something nudged me that a void remains a void (or becomes even worse) unless a leader, even a trepidatious and imperfect one, steps into it.  And so, armed with some words of wisdom, some humility (after all, I knew that some students’ grief would be juxtaposed with other students’ celebration), and a deep conviction, I showed up to class that morning.

I showed up and told them I wasn’t really equipped to moderate their discussion but felt that we needed to acknowledge what happened, our varied feelings, but mostly that for the 15-20 minutes as a class we would covenant to make our space safe for all people, and to be respectful to especially those who were grieving.  Many students cried, other students aired frustrations, some students tried to move forward.  Very gently I nudged them back toward their grief.  When one student tried to tell others they were overreacting, I did the same.

I tried to carve out a space where grief was acceptable and welcome, recalling how alone I’d felt just that past weekend when my grief had been too much for others to bear.  It was only 20 minutes.  My students have a paper due this weekend. Life goes on.

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But I wonder sometimes what our country might have been this past week if we could have bore one another’s grief a bit more consciously and transparently and reverently  over these past 18 months leading put to the election.  It seems so much anger, righteousness, and denial in both campaigns speak to distinct places and manifestations of grief in more palatable clothes.  It’s always more acceptable in America to express anger as opposed to weakness, righteousness over fear, blame rather than humility.  But it feels decidedly too little too late when so many in this country were already hurting, but we mistook their grief for the ugly face-value emotions they presented.

Perhaps my greatest comfort in these trying personal and corporate experiences of grief is knowing that even when we fail, God’s empathy is deep enough for us all.  When we think we’re alone in our grief, we never really are.  But God is also not “on our side” as we in America are always tempted to think; God does not rejoice in our clanging campaigns of strength and righteousness but in our genuine holy moments of listening to one another.

In the dramatic days after the election, despite our penchant for progress, there have been holy moments of grief.  They are moments we want to move past, but what if they’re just the beginning?  What if they are moments that truly matter?  I learned this past week that even when we are weak, God can make us strong.  We can make space for those who are grieving to be heard, and while it may seem a simple step, it’s a vital one to healing.

We cannot heal if we do not break apart.  We cannot lead if we assume God is looking for wholeness and greatness and power.  Perhaps God can use us just as we are.  Perhaps our lament is pleasing to God’s ears, too.

 

Thanksgiving (in an election season)

A couple days ago I talked with a friend who has a daughter who faces similar special needs as Lucia.  It was refreshing to speak with someone who has such a kindred attitude toward celebrating his daughter’s life, despite the challenges and the hardships.

However, as we drove home from the hospital after a successful surgery with Lucia yesterday, I reflected that in so many ways this attitude of understanding our children’s lives as cause for celebration rather than burden is bolstered by the support systems we share.  My husband and I are so thankful to live in a state that invests in Lucia’s care, to have insurance, that despite its shortcomings, generally covers all that she needs, and to have friends and family that love Lucia unconditionally, pray for her, and care for us!

It is difficult to imagine how we might view Lucia’s disability if with every medical intervention we had to also sweat the finances or insurance coverage or if we had to worry that someone caring for her didn’t have the proper resources or training.  These are the very important supports that often go unstated in the words I write about Lucia, and this morning, I am thankful for them.  I am also deeply prayerful that families who don’t have such support will find it in gracious lawmakers, caring social workers, more humane insurance policies, and more state programing for kids and families with special needs.

The pending election in this country may seem positively incongruous with this month in which we aim to practice gratitude by naming our blessings when so many, like the ones above, go unacknowledged.  But this morning, I began to wonder what it might look like to practice a spirit of gratitude despite the strife and division in this country and the world.

How would our attitudes toward one another shift if we were to focus our attention on all that we in America have to be grateful for, what we are grateful for in the candidates we support, or what we are grateful for when it comes to the provisions of our country and state (rather than only so very critical of)?  Thanksgiving invites us to pause and offer God the praise that God is due, and as we can see, this in and of itself, in an election season can be very powerful and countercultural!  Could such thanksgiving invite us to more civility and less hate?  Could it remind us of our common human needs, desires, and goodness?  Could it point us back to God when our human ways are frail and flawed?

I realize, perhaps more personally than many this election season, how dire and in jeopardy such supports for people with disabilities are, and I do not discount these challenges, but I wonder if gratitude is still an appropriate way to reflect on the hardships in the midst of the blessings.  After all, God has taught me so much about how to experience blessings despite the challenges as we’ve gotten know Lucia!

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Photo credit.

So this morning, I am thankful for…

The amazing nursing care provided through Medicaid in the state of New Jersey, for my daughter, Lucia, and the opportunity for her to attend a school come February that will meet her special needs.

All those working to welcome refugees to the abundance this land and its people can provide.

A country free from war and where so many live free from poverty, hunger, and despair.

A presidential candidate who has made disability rights a platform in her campaign.

Students at a historically black college who protested a KKK speaker in their auditorium and people protesting a pipeline that will disrupt Native American lands.  Thankful for those who lift their voices, use their bodies, and engage in brave, peaceful protest for those in need in this country.

A democratic country with peaceful elections, robust debate, and freedom of speech.

All those who love Lucia so well, celebrating rather than mourning or pitying her life.

What are you thankful for this morning?  What countercultural words do you have this election season?  Feel free to link up with this post and write your own #thanksgivingforelectionseason.

 

 

 

 

What if it’s all ministry?

As I drove into work the other morning listening to a podcast, a woman on the other end proclaimed that time is in some sense the great equalizer–no matter who you are, from the president of a country to a mother of twelve, you only get 24 hours–you can’t stretch it or exceed it or reform it.

Oh, but you can desperately and fruitlessly try…

As I’ve been finding myself at some of my limits in terms of time and energy and motivation these days, I’ve done the one thing I’ve urged my students not to do: I’ve turned inward, convinced that I’m not living up to expectations.

But whose expectations? I’ve begun to wonder.

I have realized these past few days (with some help from my spiritual director) that my own expectations have crowded out my good work as I hold a hierarchy of ministry in my mind.  As someone who has aspired to be a missionary and who has lived in abandoned bars and alongside drug addicts in Puerto Rico, sought to live in solidarity with migrants in Mexico, and slept on the floor of Chinese orphanages, I’ve always had this unspoken belief that the more uncomfortable you are, the more meaningful the work is that you’re doing.

And that’s honestly worked okay for me, because I have a high tolerance for discomfort.  I suppose I consider it one of my spiritual gifts, that instead of being repelled from what’s different, I’m drawn into cross-cultural conversation and challenges and dissonance.  But my life is not the hearty picture of discomfort that I once imagined it to be these days.  Despite those limited 24 hours, I feel the need to do more, to give, to reach out, and I struggle with the limits I experience and my finitude.

But I’m learning a couple of important things little by little.

I’m learning, for one, that one person’s discomfort looks quite different than another’s.  And I’m realizing that the ministry that God has for me may look different than what I imagined for myself.  I’m realizing that the wide breath of ministry God has put before me–ministry with my daughter with disabilities, ministry with my students, ministry with my congregants, maybe even ministry through my blog–may have gone unrecognized, especially to me.

You see, I’ve always taken that verse in the Bible very literally about selling all your stuff and following Jesus and felt pretty crappy that I still have stuff.  And part of that is really good, I think, because what I find so challenging and compelling about that verse is the reminder that aren’t people that are made for the things of this world.

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Rich young ruler (Mark 10:17-27) imagery.  Photo credit.

 

But what if it’s all ministry?  

I always tell my students and my colleagues that I want to imagine a world of abundance, a world in which everyone can succeed and thrive, because I really believe God to be a God of abundance.  But ministry…the world as chocked full of ministry, relative only to us, but wholly instituted and appreciated by God?

Well, that thought, that reality, is blowing my mind.

When I realize that I can’t sell all my stuff because my daughter needs feeding tubes to live and standers to make sure her hips don’t come out of socket and a pump to keep her alive overnight and seizure medication, it’s rather black and white and shortsighted and unfaithful to assume that I can’t be faithful to God because of all of that.  Those confines fail to reflect the love that God has grown in me for this child with disabilities, the theology that God has granted me to call Lucia good and perfect and really believe it, and the ease that I have and have always felt with people with disabilities.

That must be ministry, too.

As I looked around my life yesterday afternoon–as I walked back from ice cream with the first generation  and low-income college students with whom I’ve spent the past seven weeks, and with whom I’d grown so thoroughly–I realized some people might call that classroom one of real discomfort.  As I reflected on our little church that is a bit messy and inhabited by very varied abilities and ages and quite a few folks with special needs, I realized that some people might find that kind of worship truly arduous.  And as I thought about my writing–writing that works to connect up all these disparate avenues, foster families and China and faith and academia and caring for a child with disabilities–I realized that I’m still one messy, drawn-into discomfort individual, but I simply don’t experience it that way.

I realized that even as I’ve been fighting for a ministry that’s meaningful, God has been equipping me in the one that’s here.  I wondered in that moment if the choices I’ve made for my life aren’t so much right or wrong as tied into this purpose that may flaunt my expectations but dig deeply into the gifts God has instilled within me.  And I wondered if perhaps the greatest discomfort I’m feeling about the challenge of being here and doing all of this isn’t the very discomfort that God has for me to grow within in this season.

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God’s majesty in Yunnan, China.  Photo by Evan Schneider.

As I walked back and the wind rustled through the trees, I thought I heard a whisper, “Well done, good and faithful servant.”

And for the first time in a very long time, I think I started to believe it.