Unthinkable, really, what's been happening here.

Right now the local reporters are droning on as Air Force 1 lands at Logan, in preparation for today's memorial service. The news has not stopped since Monday, although I've done my best to drown it out: having Lil Girl over during her school vacation is a good distraction, and a good excuse to keep the tv off, but you still hear things: Rumors of arrests creep in when I check Facebook while she's playing Barbies in the other room; sirens go flying by in flocks, screaming that something is happening, but I don't want to know what; Dad calls from the airport with news of yet another lockdown due to suspicious packages. 

Every local channel has it's own somber music, it's own strained, sad-faced, semi-stoked reporters, it's own repetitive non-informative crawl, blasting basically the same news since Monday at 2:50.  They've all talked almost non-stop now for three days, showing the same, once shocking footage of blasts one and two, the helpers rushing in, the clouds of debris billowing out. We've heard - live - from every doctor about every non-specific patient and their horrific surgeries, their instant amputations, their 'luck' in that the on-site medical tent was so close, so that their injuries could be tended to so quickly. Reporters shout their non-sensical questions at these doctors at press conferences designed to comfort? us, I suppose, but that just end up making me feel more intrusive, more nauseous as I think about all these patients - all these people - have ahead of them now. 

I don't really live in Boston - but I've lived in Boston adjacent cities my entire life: Cambridge, Somerville, Revere... basically moving around the Hub counter-clockwise since I was born. It's a beautiful city, with neighborhoods full of cobblestone streets and side-walks that the wheelchair user in me hates and the history buff in me admires; where a truck will double-park in the middle of a North End street to make deliveries, not caring that it completely shuts down the traffic, since there is only one lane possible in the narrow, non-sensical street; where I've never even made it to half the cultural offerings the city offers, but it's comforting just knowing that I could. It's not technically my home, but I claim it as mine - it's more than just knowing where the closest 5 Dunkin Donuts are, or that we don't really ever call it the 'subway', but that's part of it.

 Boston isn't just a city, it's an attitude.  Massholes are proud of being Massholes - we're a cynical, sarcastic lot, sure, but - as you've probably seen this week - tenderhearted too - Wicked isn't just our favorite adjective, it's how we self-identify.  We think our sports teams are the best - even if we don't care about sports at all.  We know our traffic is the worst - and laugh when other people complain about theirs.  We know our hospitals rock - I think of all the doctors I see on a regular (weekly/monthly/all the damn time) basis, and all the hospitals I've been in that were just on the news this week.  And how I know those emergency rooms, and the nurses who patrol the halls there, and how I hope they are doing alright. -  And we know that being a center of learning - with a college on ever corner and a university everywhere you turn, brings optimism and hope and energy and enthusiasm into our cold, snowy hearts - even if it also brings pedestrians who think they are immune to getting hit by cars.  It's a place that digs its roots into you, is all I can say.

I feel almost everything right now; so close to an edge that just appeared, and all of us are tiptoeing around it, trying to avoid falling in, because we won't know how to climb out.

I hold my breath watching live tv now - I guess I've been doing it for months, but I really just noticed how bad it is this week, with everything being live all the time.  I have a distinct need for what's on to be over all ready, to know that it's ended with everyone safe and sound, to know I'm not going to be a witness to history again, today.  Because I don't think I have it in me to witness much more. 

And I'm so far removed from these things - luckily, none in my family has been harmed - although my brother was hoofing back to his car from the Sox game and heard the explosions on Monday, sent me bewildered texts as he got into his car and drove out as all the emergency vehicles swarmed in -; I'm certainly pretty safe from any terrorists here in my bed, I would think: But just the idea of One. More. Thing. Going. Wrong.  Of Texas, and now shootouts & 'controlled explosions' on city streets; of a minor fender bender in front of my house (again) and the power going out, just when the city tells everybody to stay in in order to stay safe. 

I know my armor is so thin in places that the slightest poke may cause me to deflate, implode, explode - I don't even know what.  So I huddle, and I hide from the news (as much as possible, which is, in all actuality, very little), and I hope that there's nothing else, just for right now, just for this minute.

I want to hug everyone: people I know, people I've never met, everybody on the news who's as close to tears as I am and yet manages to tell their story.  I want to build a fort, a cave, a bunker and have it swallow up all the people I love, so that I can know they are safe and close, and within reach at all times. Only my mom's insistence that it was not an option kept me from posting our couch on the #bostonhelpers website for somebody who needed it the other night - and that was just because we were supposed to have the kids and would be full up, no-room-at-our-inn. 

In one of the ever-replaying scenes of the first bomb exploding that they keep playing on Channel 4, you can see, in front of the huge puff of smoke and dirt and debris that rises up in the aftermath of the bomb, a balloon caught up in the gust of it all.  It gets swept along the edges of the cloud, higher and higher, over and over again.   On Monday, if I could have, I would've rolled my way to Copley Square, to the Finish Line I've never seen in person before (nor had any interest in finding), and searched for the hand that had held that balloon's string.

 It was all I could think of, once I saw it. Just that yellowish clump of balloons, floating up and up, again and again, following the blast.  And knowing that somewhere below, in the chaos of fences and flags and blood and fear, there had been a child who'd been cheerfully tugging that balloon along behind him/her. 

And now we know some names - of the three who didn't make it and the nearly 200 that were injured, but made it - and we know that they have long roads ahead of them, those that came through.  Those that helped, those that saw, those that ran, those that heard: there's a lot that's different, all of the sudden, and that's pretty damn scary.

The flurry of text messages and emails and twitter feeds and facebook refreshing that happened immediately after the news broke, just so I could know as many of my people were as safe as they could be - and now today (because this post has taken me days to write) all over again, with whole cities on lockdown, and gunshots and suspects being killed and others being tracked and interviews of kids who, once upon a time, went to the same charter school with the one who's still running, but they don't know anything about the 'man' he is now, or how this could have happened.  So back to all the social networks to make sure everyone is "safe" and hoping that soon 'safe' will be a word that means something again.

It's not a new world, really: it's just a new city.  A new place for an old terror, and this time, it's my place.  Our place.  The idea that my doctor's appointment on Monday might be cancelled because they're rescheduling things due to today's city-wide lockdown?  What is that, even?  Who makes sense of that? I think about taking my niece on her first trip to the Swan Boats this summer, which is something I promised to do, even though I get sea sick  looking at pictures of boats, and the idea that being out in the Common might not be safe?  Does not compute.

It doesn't make sense, it's not going to make sense, and even when this is over, it won't be over.  We know it.  And we'll live with that.  But I sure wish it was still Sunday, when my only thought about the marathon was that it would preempt all the shows the next day.  I'm not sure this post makes as much sense as I would like it to, but I need to say something, if only to get it all out of my head. 

I hope you are all safe, where you are, and that you stay that way. 

That's ok: I don't need to shower

So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower.  I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks."   That was news to both them and me, I assure you.  And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing.  But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc. 

We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary.  Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add.  But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK. 

30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.


At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me.  She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply.  Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013.  I've had two people come out since then, both for evaluations. 

Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are."  Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)!  Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make??  True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense! 

Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on.  So I try not to rock the boat."  She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours?  Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?

I don't think you even have had to pass math to guess, but the chances of that are also zero!

There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money.  There's a lot of talk about cutbacks to essential social services and financial supportive programs.  You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.

And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people.  Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program.  But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have.  That to ask for more is to put it all at risk, and that was enough.  And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything.  But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.

But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right.  I'm just being overly sensitive. 

   

American Censorship Day

If you've been on the Internet at all today, you might have seen something about American Censorship Day.  I first noticed it on Reddit,  and I didn't know what it was about, but as I spent more time wandering through the web, there were about fourteen petitions floating around, begging for signatures.  Honestly, it seemed pretty straightforward to me - the government and entertainment industry are looking for greater controls over the internet, the ability to shut down certain sites, should there be posts of copyrighted materials.  On the surface, I can see both sides to this - Copyrights are protected for a reason: the artists and business people who create films, music, art, etc, work hard and should reap the rewards of their crafts, to the largest extent possible.  On the other hand, letting the government, or a movie studio (for example) have the right to shut down, fine or punish an entire website for the postings of one user?  Seems like an extreme overreaction. 

I saw this video, and it made a lot of valid points I hadn't considered, regarding the economic ramifications of the bill(s):


PROTECT IP Act Breaks The Internet from Fight for the Future on Vimeo.


For myself, even though I respect that copyrights are important, my position (if I've understood what I've read and seen today correctly), is that this is a bill that should not pass.  This bill is way too strict (in terms of penalties), open-ended (in terms of who has the power, and what powers they would have), and doesn't really address all of the (or, honestly, any of the) concerns  I, as an internet user, have about systemic censorship.  So I signed a couple of petitions, and I'm going to see what I can do about calling my Congressmen tomorrow.  Because, even though I haven't heard of it before, this is something that's frightening to me: Giving corporations (even entertainment industry corporations) more power than they already have?  Not a fan.  Punishing all users as if they are monolithic entity?  Not a fan.  Limitless ability to ban websites with very little (or any, as far as I could see) oversight?  Not a fan. 

Censorship in America is so 18th century (if only); Let's keep it that way.

The text of the bill is here;  the Reddit thread I first heard about this from, and which shows that the websites of the bill's own co-sponsor would be in violation of the bill, should it pass, as well as a ton more information, including how to best contact your Congressperson, is here.  


Also, PS? The idea that the Washington Post says that Tea Party advocates are against these bills gave me more than a moment's pause.  I will freely admit that I do not want to be on the same side of just about anything as the Tea Party, since they are generally... the polar opposite of my every instinct.  So I took a little longer to research, after I read that, just in case I was missing something.  But no: They're worried about "business strangling power" that the government might have, if the bill is passed, so I guess, even though we have different reasonings behind it, there's a first time for everything.