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How to excel at social media

29 Jun

So you want to be a social media guru? Get that blog you’ve started out into the wider world of interwebs? Well, grab a cup of coffee and let’s get going!

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1 – Get online

2 – write brilliant post. make sure you’re interrupted at least 73 times while writing

3 – have crappy but expensive internet service that claims to be high speed randomly stop working

4 – curse, reset router, curse some more, sacrifice chicken, get internet working again, hit “publish” on blog post

4.5 – get interrupted because your magical finding powers are needed to find something

5 – realize that some of your social media connections aren’t right, so the post isn’t publishing where it should. Fix issue. Realize the fix didn’t take. Fix again. Realize again that the fix didn’t take.

6 – Choose to manually share to all your social media outlets.

6.5 – get interrupted again by family, forget to share places

7 – Share other people’s social media stuff. Only to find out that since changing your passwords three months ago, nothing is connected correctly and you have to enter the password to share other people’s stuff to your Twitter account.

7.5 – get interrupted for requests for juice, money, or input on something

8 – Get locked out of Twitter after X amount of failed attempts because you can’t remember what your new password is

8.5- wonder once again why writing down your passwords is considered bad

10 – realize your coffee’s gone cold and consider blogging about it. re-rea

11 – repeat steps 1-10, including getting so distracted that you don’t realize there’s no #9.

There! Now you’re using social media to its fullest!

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art credit – Mike Mitchell

 

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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.”

 

 

My 14 year old graduates from 8th grade today – doesn’t that sound so normal?

26 Jun

It does, doesn’t it?

It’s so ordinary. Everyone who’s had a 14 year old goes through this. Maybe at 13, if they had a late birthday. But we all go through this.

Today, I will sit in a gym, on a bleacher or in a folding chair, and watch 8th graders in their newest dresses and nice shirts and Converse shoes file by and get a diploma. My daughter will be one of them. We will be one in a crowd, a snapshot in time where we shall blend a little. There will be others there, who don’t know my daughter, who won’t know how many disabilities she has or how hard she’s worked to get to the level she’s at.

I don’t know how she’s going to manage this – will she collect her diploma and shake hands and be good with that? Or will she bounce up onto the stage, give people hugs, shout “Woohoo!” to the crowd? It’s an either/or really.

Friday, they had a special ceremony for all the kids in her program who are graduating. A private gathering for students, teachers, peer tutors, and parents. A ceremony of their own, because not every child will be able to get through today’s ceremony (though all are given the option.) They had a party afterwards as well. The teachers went all-out on every aspect of it, and honestly, it was way more than I expected going into it.

The one thing that struck me though, looking at the peer tutors – other 7th and 8th graders – and my daughter, was how different my daughter was. Among her classmates in her program, she blended a bit. But around the other students, the “traditional” students, she just looked…younger. Even though she is as tall as most. Even though her clothes are from similar stores they shop at. Even though she’s the same age or even older than some. She just looked younger.

I don’t expect my girl to blend – because she’s my girl, and we don’t blend. But it was unexpected, to see her next to a typical 14 year old, and to see the differences.

But today – today she’ll be part of the crowd. Will she blend? That’s up to her. But there will be this moment in time where she will just be another 8th grader. And I will appreciate that moment, even while appreciating all the extraordinary that went into getting to this moment.

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