Tag Archives: adovcacy

Thanks-giving

I can’t tell you how often these days my husband and I are brimming with joy as parents.

Every time our daughter smiles and giggles and babbles her sweet sounds, life–nearly four years of it together now–just doesn’t get any better.  Indeed, when I look at photos like this, Lucia’s face pink and scarred from laying her cheeks in stomach acid night after night when she couldn’t tolerate her feed, I think just how far we’ve come.

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…and smiling through it all!

But a lot of things have also stayed the same.

Lucia still needs a tube to feed during the day and overnight, she’s still prone to seizures, she’s having trouble breathing, and she’s scheduled for major surgery in 2018.  Our family equilibrium isn’t typical, and it doesn’t come from a respite from medical complications, technological procedures, or nursing interventions.  Rather, it is those very things and an incredibly spirited three-year old that often makes life so much fuller, grander, and more beautiful than we ever could have imagined.  Ever since we got private duty nursing through Medicaid when Lucia was about a year and half old, not only her cheeks, but her lungs, her digestion, her joints, her nutrition, and her mood have all shown such growth.

In this season of thanks, we have so much to be thankful for.  

And yet, I’d be lying if I told you that 2017 wasn’t anything but an incredibly trying year.  In the midst of all of Lucia’s persistent health challenges, we’ve also faced major threats to her healthcare and provisions for people with disabilities all year long.  Living life with this constant threat hurts more than the uncertainty we face with Lucia, because it’s complete manufactured and manmade.

And  I can’t help but thinking about how the spirit of this Senate tax bill seems so out of sorts with this week’s cherished American tradition.  They call it Thanksgiving, because it was one of the Pilgrims’ first corporate acts of giving thanks for the good harvest.  And while the stories we tell our children about the miraculous sharing of a feast between the white colonialists and the Indians may not be entirely accurate, they reflect an idealized notion that thanks must be freely given and cannot be readily given unless there is peace, justice, and provision.

So this week, the prospect of giving thanks when so many are facing the looming possibility of losing their healthcare, people who are poor and hungry will suffer because of the bill, and people with disabilities will lose benefits and supports because of it, seems downright trite and inhumane.  I wonder if when we go to celebrate this week, we might practice yet another storied, American tradition–that of patriotic protest, dissent, and advocacy and urge those we love and those around our tables to give as we give thanks.

You give to my family every time you make a phone call to your senator and tell them that people with disabilities shouldn’t suffer so that this country can save money.  You give to my family when you pay your taxes and portions of those taxes go to programs like Medicaid that support nursing care, medical coverage, and medical equipment for kids like Lucia who are deemed too costly by private providers.  And you give to families, especially those who find themselves in need this season, when you make clear that we cannot celebrate tax cuts when the poor get poorer and the hungry go hungrier.

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Miss Lucia laughing in her stander.

If this truly is not just the season of giving thanks but also of giving, then let us gather together to make not just my cup, but every cup of every parent in this country overflow with gladness.  None of our journeys are typical, but that’s what makes this country so great.  Let’s not let a few hard-hearted people in Washington make it otherwise, especially on Thanksgiving.

And from the bottom of my heart, for all your phone calls, prayers, and support,

thank you.

 

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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!