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To the person who doesn’t want to give up their subway seat for my kid…

9 Jul

This article popped up in my feed. I read it, and I’ll admit, part of me did agree with you. But then you sort of glossed over that disabilities may not be seen by the naked eye. And that’s where you lost me. And since I was willing to hear your side – and again, even agree with some points – I think you now need to hear my side of things.

When we lived in Dublin, we were blocks from a Luas station – the Luas being the light rail train that ran from the more suburban areas of Dublin to City Centre. As someone who grew up with commuter trains in Chicago, I was enamored of the Luas. Trains get people places, and for less than what parking would cost.

My daughter Maura loved the Luas. She had her own Luas card for commuting. Because for the first few weeks of school, we had to commute by train. The commute meant walking the five-ish blocks to the train station, and down two flights of stairs to the platform (or use the elevator), take the train to our stop, then walk another several blocks to her school. Since we were traveling during the morning commute time, the train was usually full when it hit our stop, and packed by the time we were ready to get off. I soon figured out a spot that worked for us – the last car, by the back door, against the wall where Maura could lean against it for support, and a quick and easy exit. I would stand in front of her, shielding her a bit, but also shielding herself from other passengers so if she lost her balance, she lost it onto me and not a stranger.

 

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Maura waiting for the train in Ireland – 2011

 

Usually mornings went smoothly. It was afternoons that got difficult. She’d be tired from the school day, and the walk to the train could mean a series of bribes and cajoling. There was a little convenience store right next to the train where I’d let her buy a bag of popcorn if that’s what got us to the train. I would hope that we’d get a seat so she could sit and rest before having to walk home. If it was full, I’d be the mom you described in your piece, telling her she could sit soon, and nabbing the first spot available for her.

The train in Dublin wasn’t nearly as cut throat as other systems I’ve ridden on (which, on top of Chicago, I can add Paris, Barcelona, London, and yes, even the NYC subway.) The Dublin train riders were more likely to give seats to kids. Once, a school group came on, and little girls in plaid skirts were taking seats – and I watched not one, but two young men get up from their seats and move in order to give the school girls their seats, so that the teacher was able to have them all in one place. They didn’t ask how able-bodied the girls were.

Listen, I have taught my own children to give up seats for those who need it, whether it be at church or on a train. They have never balked or complained, and now, as almost grown/grown people, they are still giving up their hard-earned seats for those who may need it.

But I’ve also been the mom who needed the seat for my kid.

My very normal looking kid.

My kid who may look like she’s enjoying standing there on her own two feet.

My kid who had epilepsy that affected her balance. Who has motor skill issues that affect her balance. My kid with low muscle tone, who tires out more easily. My kid who can’t always correct or catch herself when she starts to fall, or who can’t always move fast enough to block herself when she does fall. The kid who couldn’t understand why she couldn’t sit when tired. The kid who’d be safer seated on a bouncing cornering train. The kid who, in your eyes, at first glance looks totally normal and healthy. Because she is healthy for the most part.

The one you basically dismissed with your bland statement that disability isn’t always visible to the naked eye. Because while you’re willing to write – possibly in a CYA sort of way – that not all disabilities are visible to the naked eye, you’re also ready to write off that me promising my kid a seat equates to coddling. Because to the naked eye, my daughter looks like an average kid.

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Maura – 2017

 

Now more than ever, I need that seat for Maura. Yes, she’s older, taller, and better at balancing herself. But when she stumbles and falls or needs support, she leans on me. Me, her now-shorter-than-her mom. Me, the gal with the twitchy back and inflamed shoulder. Me, who got that twitchy back and inflamed shoulder from years of helping Maura physically. Me, who would and has happily not sit if it means my daughter gets a seat.

Maura getting a seat means she gets a rest break – one that may not seem needed but will pay off later. Maura getting a seat means that I don’t have to use my own body to help hers cope and adjust with swaying train cars, stops and starts. Maura getting a seat means she won’t bump into other passengers while trying to catch her balance.

Listen, our world is more difficult to navigate because of my daughter’s disabilities. That her disabilities are invisible doesn’t make things better. Because we get judged – whether it’s for using the disabled toilet, or using the disabled seating on the train, or being judged as a coddling parent by someone’s cursory glance.

There are a lot of disabilities that aren’t visible. I personally know several kids who could use a seat on a train even though they look able and happy because their disability isn’t apparent to the naked eye. Kids with autism, kids with mild cerebral palsy, kids who have had strokes as toddlers – and my own kid, who doesn’t have a diagnosis but definitely is disabled.

And you know what? As the mom of three other children, who are all able-bodied, sometimes even those kids need to sit. They’ve had long days, or have a long trek ahead of them once they get off the train, or are just clumsy and would be safer on a seat. Moms who have been dragging their kid about town and are tired of playing goalie and just want to put him in a seat for five minutes so she can take a breather because she knows passengers will give her the stink eye if her kid bumps into them.

Listen, we’ve all been a bit of an asshole when it comes to holding onto our own hard-earned seats on trains or busses. But I’m pretty certain that kids having seats on trains isn’t the downfall of civilization as we know it. And as the mom who used to ride the Luas constantly with her own kid who did need the seat, I am grateful for every kind person who offered a seat to my daughter.

 

 

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Can we discuss being able-bodied?

27 Jun

My daughter Maura is able-bodied. Her legs work fine. Her muscles are pretty strong. Her organs are doing awesome. Even her epilepsy has cleared up, gone into remission or whatever epilepsy does when it stops occurring. Sure, there’s some low muscle tone and some far-sightedness, and she’s not amazingly coordinated. But all in all, Maura is quite healthy.

But she is also disabled.

But she would be considered able-bodied.

But she’s actual disabled.

But she’s healthy.

She is a conundrum. She doesn’t appear disabled. She has what’s known as “invisible disabilities” – hers can’t be seen at first glance. And that’s what’s getting me worried, what with health care back on the auction block.

Kellyanne Conway said (and I reluctantly share) –

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don’t bother clicking the play button, it’s just a screen shot

 

Does this mean she expects someone like Maura to see what her options are?

“Don’t be silly Phoebe, she doesn’t mean her, obviously.”

But obviously, Maura is able-bodied. And Maura’s been considered “not disabled enough” in the past, by the state of Michigan when we applied for a children with special needs Medicaid program.

You can be able-bodied and unable to work. Maura a prime example. But there’s also those who are working so hard to just stay alive mentally that they can’t actually hold a job. Should they seek “other options” because they have PTSD or depression? Should they be denied Medicaid because they are working to figure out how to live with schizophrenia right now? I mean, they might be as able-bodied as Maura. Are they just all slackers undeserving of health care?

Meanwhile, V.P. Pence said this –

 

First – why the rush? Why does it have to be by the end of summer? Why can’t we take our time and do it right?

Second – what’s this “personal responsibility” you speak of? Can you define it more?

Because, Mr. Pence, your platform is a pro-life one. And one would think that being pro-life means you’re willing to help all lives, not just congressional ones or political ones. But when you say “personal responsibility”, it seems that you are putting families who do choose life – whether it’s the couple whose unborn child has been diagnosed in utero with Down Syndrome or the woman taking care of her elderly parent – off to float alone.

That isn’t the American way. It may have become the Republican way, to smack a person on the ass as you shoo them out the door while yelling “Good luck! By the way, there’s holes full of bears and snakes!”, but as Americans, we pride ourselves on coming together and helping each other. That’s why there are so many people sharing Go Fund Me campaigns to pay for someone’s child’s new wheel chair (that isn’t covered by insurance) or wife’s cancer treatments (that have left them bankrupt).

You say “personal responsibility” like we all haven’t been personally responsible for our health care bills. Newflash – we already are. Too much so. But the way you say it has people worried. Do you expect my disabled daughter to be personally responsible for her health care bills when she can’t be left responsible for brushing her teeth daily without supervision?

“Of course not Phoebe.” you may say. But what you’re also saying is that we as her parents, who are being pro-life, are personally responsible. And not to expect help. Ever. Because that’s the Republican way.

So here I am, with my able-bodied daughter, wondering what the future holds. What the future is going to expect from her. And I don’t know.

What I do know is that something like health care shouldn’t be rushed. Something like health care should have lots of input from people whose lives it affects. Some things, like the phrases “able-bodied” and “personal responsibility” shouldn’t be thrown about carelessly. Health care shouldn’t be broken down into sound bytes and tweets.

And I definitely shouldn’t be told I’m overreacting or that it can’t possibly happen when there are congressmen who are willing to vote on a health care bill they haven’t read.

I have enough to worry about and plan for Maura’s future. I don’t need to worry about what kind of job will give her health benefits because she’s deemed “able-bodied” and able to work.

If you live in these states, please call the listed senators. If you don’t live in these states, pass on this list to people you know in those states. A call script is below the list. Copy and paste for widest circulation. Call EVEN IF they said they are voting against the bill. GOP Leaders are looking to offer $$ for votes right now.

Alaska – Lisa Murkowski (202) 224-6665
Alaska – Dan Sullivan (202) 224-3004
Arkansas – Tom Cotton (202) 224-2353
Arizona – Jeff Flake (202) 224-4521
Colorado – Cory Gardner (202) 224-5941
Florida – Marco Rubio (202) 224-3041
Louisiana – Bill Cassidy (202) 224-5824
Maine – Susan Collins (202) 224-2523
Nevada – Dean Heller (202) 224-6244
Ohio – Rob Portman (202) 224-3353
Pennsylvania – Patrick Toomey (202) 224-4254
Wisconsin – Ron Johnson (202) 224-5323
West Virginia – Joe Manchin (D) (202) 224-3954
West Virginia – Shelly Moore Caputo (R) (202) 224-6472

“Hi, my name is [NAME] and I’m a constituent from [CITY / STATE].

I’m calling to urge Senator [NAME] to vote against the Better Care Reconciliation Act. As the CBO analysis of the bill makes clear, this legislation will cause millions of people to lose their insurance and will raise premiums for millions of others, yet does nothing to resolve the Affordable Care Act’s shortcomings. I hope the Senator will do the right thing and reject this bill, even if there are modest changes. Reforming the ACA should be done in an open, deliberate way with public hearings and input – not rushed through the Senate with only days to consider the ramifications.”

 

 

We were the parents picking and choosing what health services we could afford for our daughter

2 May

Jimmy Kimmel’s monologue about his son’s birth and discovery of a heart defect is making the rounds. I won’t lie – I’ve never wanted to hug a celebrity more than I did watching his video. I’m so glad everything is going well so far, and praying it will continue to go well.

Near the end of the monologue, after awesomely thanking all the hospital staff, family, friends, Jimmy goes on to say how thanks to the ACA, his son won’t be rejected from insurance because of his pre-existing heart condition. He also says “No parent should ever have to decide if they can afford to save their child’s life.”

I totally agree.

But I agree because a decade ago, we were the parents picking and choosing what we could do for our daughter.

Ours is a tale of the self-employed. Back then, my husband was a consultant, and we were living a decent life. We had three small but amazingly healthy kids. We only saw doctors once a year for check ups. We decided to have that fourth and final child. She too was born healthy, though the pregnancy was the first clue that our insurance was not-so-great – it didn’t cover my “pre-existing maternal condition”, so six months into the pregnancy, we discovered we’d have to pay out of pocket for that pre-natal care the insurance rep told me was “not medically necessary”.

Luckily, my ob’s office had a non-insured rate to bill us at. It was still a chunk of change.

For this, we paid at one point, $700 a month out of pocket.

We still didn’t understand just how bad our insurance was. Not until Maura was 15 months old and our pediatrician sent us for a blood test to check her genes, make sure they were all there. They were, and for that knowledge, we got a bill for $1200 – our insurance, it seemed, didn’t cover lab work.

In this foggy time of discovering Maura had developmental delays, we were left with a choice parents should not have to make – “Do we test? If so, who do we go to, because we can only afford so much testing….” We signed up for the free Early Intervention through the school district in the meantime.

I called the now non-existent Behavioral and Developmental Clinic at the prestigious university hospital. I thought our money would be best spent there, since no one was quite sure where to start with Maura. They claimed they would discuss her case with a group of doctors, and we’d be seen by the correct specialist.

“What’s your biggest concern?” the intake person asked me over the phone.

“She’s twenty months old and not walking.” I stated, then mentioned also the fine motor skill delays and speech delays, to boost our case.

They heard “Not talking, almost two” and sent us to a child psychologist, who did a minor screening, then announced happily to me that Maura was not autistic.

“Well, yeah…” I responded – because the one area Maura shined in was social skills, her EI therapists weren’t worried about autism. “But can you tell me what she does have?”

“Oh, I don’t know, you’ll have to see someone else.”

I left, furious, after paying $250 out of pocket because my insurance didn’t cover “mental health issues”.

One nurse did tell me I should check with the state’s Medicaid program for children with any sort of special needs, that we’d definitely get on it, and that would help with the costs. So I called them up.

“What’s your daughter’s diagnosis?” the representative asked.

“She has developmental delays.” I stated.

“Does she have any other diagnosis?”

“No.”

“I’m sorry, but we don’t cover developmental delays. Maybe if you can get a diagnosis, you’ll be able to get on the program.” the rep said nicely.

“Yes, but we need this program so we can afford testing so we can get a diagnosis.” I sighed.

Still, Maura remained healthy and happy. She grew normally. We paid out of pocket for stuff. Josh changed job roles, going from a consultant, to a partner in a consultant group, that was small, but did provide insurance.

So we went to the neurologist. Who found nothing. We went to the geneticist, who found nothing. We went to the orthopedic guy to get Maura much needed ankle braces, so she could walk straight. Those braces cost $1700. Insurance covered the first thousand, the rest was up to us, and oh, insurance only covers the cost of these sorts of supportive braces once a year – so if your child has a growth spurt two months after receiving the braces, the next pair is on you. Except orthopedics know this so have ways of making that one brace last a calendar year.

At one point, we bought a house. A fixer-upper with 30 year old carpet that tore if you stubbed your toe on it. We ripped up all the carpeting….and then received $3000 worth of medical bills for Maura in the mail. So we paid the medical bills and I threw area rugs over subflooring until we could afford replace what we tore up. Because that’s just how life worked at that point. We paid the medical bills and made everything else work.

And then, Josh applied for a job in corporate America. And I read the benefits package. And I may have grabbed him by the shirtfront and yelled “OMG DID YOU SEE THE INSURANCE PLAN? YOU HAVE TO GET THIS JOB!!!”

And he got the job. And I would walk into doctors offices going “Ask me how much my co-pay is? NONE! I have none!”

It’s amazing how much less stressful your life is when you don’t have to go “Gee, I know she needs to see both specialists, but we can only afford one, so which will it be?” But I also will never forget those times, because they sucked. There  you are, learning that there may be something wrong with your child, but you can’t afford the cost of finding out what that wrong thing might be?

No parent should have to go through that.

But wait – in writing this, I realize I need to back up, to a time before Maura even.

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Me and Miriam – April 2001

We had moved from one state to another. And in doing so, our insurance through one state-based firm was supposed to transfer to the other state-based firm. Yet it didn’t. There was a mix up in the paperwork. A six month mix-up that took endless phone calls and paperwork being sent back and forth and lost in the process, and much swearing.

In the midst of all that, we went to my mom’s house that Thanksgiving. Long story shorter, Miriam, then a tiny toddler who was sixteen months old and wore 6-9 month sized clothes, climbed up the stairs at my mom’s. Josh, being a good father, followed her up the stairs, then closed and locked the baby gate when they got to the top. Sean said “Hey Dad, look!”

Josh looked.

Meanwhile, downstairs, I heard a soft thunk. “That’s odd.” I said, as my mother and I both got up from our seats in the living room to go look.

Josh had also heard the thunk. He thought Miriam went into my sister’s room and knocked over something. Then he heard me say “Miriam! Are you okay?”

I was down in the front all, my 16 month old laying on the floor looking dazed. Josh was upstairs trying to unlock the damned baby gate. I picked up Miriam, and was spooked that my child who yelled about everything was being eerily quiet. My stepdad and grandma were now by me. Josh decided to hop the baby gate at the top of the stairs. Just as my stepdad was saying “Here, give her to me, let me see”, Josh came rushing down the stairs.

“She was up there!” he said.

We all looked up, 10-12 feet, and what happened hit us.

Somehow, the tiny 16 month old slipped through a five inch gap in the railing in the upstairs hallway and fell to the first floor. My brain was racing with the thought that I should have never picked her up off the floor. If she had damaged herself, I just made it worse by picking her up.

“What do you want to do?” someone asked me.

“I want to take her to a doctor and have them tell me my baby’s okay.” I replied as I clutched my still not crying toddler.

“Let’s go.” Josh said.

“OMG!” my mom blurted out in horror.  “You don’t have insurance!” Ironically, we had been telling her the tale of trying to get insurance earlier.

“I don’t care, we’ll figure it out later.” Josh said.

$6000 later, we were told that Miriam was, in fact, fine. Miraculously, we left the hospital six hours after arriving, with only a bump on her forehead to show she had fallen. If Miriam had been injured, it would have been a much higher bill. If she had been injured, would we have had to choose what we fixed? We were uninsured, who knows what would have happened if she’d had a broken leg, or head injury, needed surgery or a week’s stay in the hospital. Actually, bankruptcy probably would have happened, to be honest. Because we were racking up $1000 per hour we were in the ER.

Luckily, there was nothing wrong with our tiny toddler. Luckily, the bill was *only* $6000.

My mom ended up filing a claim with homeowner’s insurance, and the man – who had a toddler of his own and a staircase design similar to my mom’s – ruled it a freak accident and they’d cover the entire bill.

Thank God, because honestly? We didn’t have $6000 for medical bills.

We’ve been there, on both sides of the coin. As parents of a healthy child who’s had a freak accident, and as parents of a child who has special needs. We’ve had to choose what to do medically for our children, knowing we would have to pay for it ourselves, or go into debt for it. We have had to choose, do we take her to a neurologist or a developmental pediatrician, because we couldn’t swing both. We have sat with a pile of medical bills, choosing to defer student loans yet again, because student loans would still be there, but we’d want to see the doctor again and we couldn’t be seen if we had an outstanding account.

So as you wipe tears after watching Jimmy Kimmel plead for health care for human beings, especially the tiny ones, remember that this is something so many of us deal with on a day to day basis. There are real live people behind these stories. And these stories are common. Much too common.

I know, because I’ve lived it.

“No parent should ever have to decide if they can afford to save their child’s life.”

 

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Maura, Easter 2010? She was having seizures b/c of an ear infection. Luckily, this was all covered by insurance, and she wasn’t excluded from insurance because of her pre-existing condition known as epilepsy.

 

 

 

 

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