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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.”

 

 

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It’s not just about DeVos

7 Feb

Betsy DeVos – now famous for, well, grizzly attacks on public schools – has become Education Secretary. Barely. With no education background, she is now in charge of our public school system, and all the laws about education. Some of which she finds “confusing”.

Let me repeat – the woman in charge of upholding education laws doesn’t understand education laws.

And upon her confirmation, parents of kids in special ed collectively cursed, shook their heads, and rolled up their sleeves. See, we’re used to having to fight for our kids.

I’ve been watching the new administration before it was a new administration. Trump has been quoted saying he’d like to get rid of the Dept. of Education altogether. So wanting DeVos as Education Secretary isn’t that huge of a surprise. Nor is the almost instant news of abolishing the Dept of Education that headlined today after the confirmation.

But it’s more than education that’s caught my eye.

First, we have a nominee for Attorney General who also doesn’t support IDEA –

In May 2000, Sessions took to the senate floor to make a lengthy speech on the Individuals with Disabilities Education Act, arguing that federal protections for students with disabilities was a reason U.S. public schools were failing. – HuffPo

Meanwhile, we have a nominee for SCOTUS who sides with schools over students when it comes to IDEA –

In a second disability rights case, an impartial hearing officer, an administrative law judge, and a federal district court judge all agreed that a young autistic boy, Luke, needed placement in a residential school program due to his total lack of progress in “generalizing” skills — applying skills learned at school to other environments. Judge Gorsuch wrote the opinion reversing. He found that because Luke was making “some progress” toward his education goals in the public school — even though it was undisputed there was no progress outside of school –the school district had met its obligations under the Individuals with Disabilities Education Act (IDEA). But Congress had made it clear that the IDEA should help students make progress toward independent living. Generally, not just in school. The narrow and outdated standard used by Judge Gorsuch is now under review in the U.S. Supreme Court. –        (source:ACLU)

 

And then you add up things like the ACA and all it’s handy little bits like insurances can’t deny you if you have pre-existing conditions, attempts to slash Medicaid, etc…

…and you begin to fashion a hat out of tinfoil. Because it all starts feeling like a giant conspiracy against people with disabilities.

Seriously – if we can’t get educations or health care for people of all ages with disabilities, then what? We can’t move to Canada – they don’t take people with disabilities, despite how warm and fuzzy Justin Trudeau appears. Besides, aren’t we, as Americans, supposed to be better than that? Isn’t America the place where everyone gets a chance to succeed in life? Or is that now only limited to the able-bodied?

No, this isn’t just about Betsy DeVos and her lack of understanding about special education laws. This is more. This is about an administration who not only seems to not care about disability rights, they seem almost determined to make things harder for people with disabilities. What’s next? Repealing the Americans with Disabilities Act because it costs too much to put a wheelchair ramp in a public building and it’s “bad for business”?

Again, maybe I’m just fashioning myself a tinfoil hat. But these days, it seems anything goes. We now have a Education Secretary who thinks there should be guns at schools in case of grizzly attacks.

No one saw that coming, not even the bears.

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Don’t be like Barb

23 Jan

Yes, I understand that this presidential election has been especially contentious. And yes, I also understand that we are very divided by our choices.

But when it comes to name calling, can we leave some things out of it?

See, yesterday, I was scrolling through Facebook when one of those “Your friend commented on a public page’s post” thing. The post was about Ashley Judd’s slam poetry performance at the Women’s March. I watched it before, it was interesting. Slam poetry isn’t really my thing, but this one held my interest.

It held a lot of people’s interest.

It was reposted by some Facebook page with some name that gave its political leanings. There were a lot of “OMG she’s trash” and “I will never watch her again!” type comments. People didn’t understand that it was slam poetry, so without that tidbit of info, I can get why they thought she was just randomly ranting.

Now, I don’t usually comment on such things, because as we all know, posting an opposing opinion on such a thread means you get 78 notifications about how you must be stupid, and are most definitely wrong.

But my friend posted, which put it in  my feed. And the comment she posted on caught my eye.

A woman named Barb (Not My Friend) posted this – She sounds like schizophrenics I’ve met doing service projects in locked mental wards.

And my face went like this

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My friend pointed out that it was slam poetry. Me? My hackles got up. And I said this – Maybe you should rethink doing service projects in mental wards if you’re going to use schizophrenia as an insult.

My friend backed me up – so much yaaaaas 

Not My Friend Barb tried to defend herself –  Schizophrenia is a medical condition. It is not an insult, that I’m aware of.

And I was like

pope ohnoz

Then I responded with – and yet the way you use it IS meant to be insulting.

A woman reading slam poetry that you disagree with is not the same as schizophrenia. Comparing one to the other is insulting and shows lack of compassion.

Barb deleted her comment. I know, because another cool friend of mine commented on it, and I was notified of it, but when I went to read it…poof…all gone.

But let me reiterate what I was saying to Barb –

When you use a medical condition in an insulting manner, it is STILL insulting.

We all know the famous one – calling someone “retarded” (and yes, you can still find the words “mental retardation” in medical files. Ask me how I know.)

But calling someone schizophrenic, bi-polar, autistic, etc, as a put down, it’s insulting. When you use it as a negative comparison, it’s insulting. Plain and simple.

And when someone says “Wow, what you said is insulting.”….do me a favor…don’t say “No it’s not.” Instead, put your listening ears on, and maybe ask “Why?”

Case in point –

Years ago, I was on a message forum for parents of children with special needs. The needs were varying, as were the parents. One day, one mom said something about “spazzing out”. Another mom stepped in and said “Please don’t use that term, it’s a derogatory term that comes from “spastic” and it’s insulting to my child, who is actually spastic.”

The first mom didn’t say “Well I didn’t meant it like THAT.” No, the first mom said “Oh my gosh! I’m sorry! I never thought of it that way. Thank you for letting me know!”

And the other mom was like “Okay, we cool. Thanks for listening.”

Because you know what? There are words and terms that were once, or still are, insults. I don’t claim to be perfect on them all either, but I’m willing to listen and try to do better next time.

I get it. These are trying times. We should all take the high road, but we don’t. We support our cause vehemently, and sometimes, without being thoughtful. Yet we need to sometimes take a step back and think before typing – or maybe decide not to type at all.

I don’t know if Barb got what I was saying. Maybe she did, maybe she didn’t – she ended our conversation before I could find out.

What I do know is that Barb should probably find a new service project because she doesn’t seem to have enough compassion for the people she’s been working with to not use their diagnosis in an insulting manner.

Maybe she could clean toilets.You can do a lot of thinking while cleaning toilets.

 

 

 

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