Accessibility

When some­one asks, “Is (X place) acces­si­ble?” the answer is “no” if there are any stairs involved in get­ting there. It doesn’t mat­ter if every­thing inside X is on one lev­el but there are three “lit­tle” steps at the front door, or “just one flight of stairs out front.” Those “lit­tle” steps aren’t so lit­tle for those using scoot­er and wheel­chairs. The answer is also “no” if there is no whol­ly acces­si­ble bath­room near the main area.

Just once, I’d like to arrive some­where to find a place tru­ly acces­si­ble instead of hav­ing some­one who’d claimed acces­si­bil­i­ty say, “Oh, I didn’t think about those lit­tle steps!” or “But that’s just one flight of stairs!” or some such stu­pid thing. Even though I hap­pen to be able to walk most of the time, if I’m using my scoot­er, there’s a rea­son for it. If I were to get off of it to walk up those few steps, where am I to store the scoot­er? 1 Plen­ty of oth­er peo­ple can­not walk up those steps.

Why choose an inac­ces­si­ble place of busi­ness, any­way? Why are builders con­tin­u­ing to build inac­ces­si­ble res­i­dences? It isn’t expen­sive to build in acces­si­bil­i­ty in the first place, com­pared to ren­o­vat­ing for acces­si­bil­i­ty. Has all the talk of the aging of Amer­i­ca meant noth­ing with regards to home design?

Every­one is just tem­porar­i­ly abled in the long run, any­way. If you buy or build a house, it pays to go ahead and con­sid­er whether or not it would still suit you if you were injured in some man­ner. Could you get around on crutch­es or in a chair? If (shock­ing thought) you were to want to enter­tain some­one who uses mobil­i­ty devices to get around, could that per­son even get in your front door? Any door? I’ve lived in places where the answer would be a resound­ing “No!” and even if we got the poor soul in through, say, the garage, she couldn’t get up to the liv­ing areas.


1 A sig­nif­i­cant invest­ment.

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Three Good Things!

The last time I respond­ed to a prompt from Plinky, it post­ed with absolute­ly no context—so let’s try to fix that this time. Today’s prompt is:

Share three good things about your life right now.
(A lit­tle New Agey, maybe, but it nev­er hurts to look on the bright side.)

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YAY!

We were fair­ly sure of this right after I final­ly had my Social Secu­ri­ty hear­ing last month based on the very pos­i­tive state­ments from the judge, but I didn’t want to jinx any­thing. We got the offi­cial let­ter in the mail today, say­ing that the deci­sion was “ful­ly favor­able!” SQUEE!

It will still take some time for that deci­sion to bounce around the bureau­cra­cy and get month­ly pay­ments start­ed, much less get the back pay from the SSA. Because the onset date was years ago, I should be eli­gi­ble for Medicare right away, but I’ll need to talk to the attor­ney about that on Mon­day.

I real­ly need­ed some good news, so the tim­ing is mar­velous.

This process has been an insane endurance con­test. The fact that the SSA has been absolute­ly obstruc­tion­ist through­out (and I know my expe­ri­ence is far from unique!) is ridicu­lous. The sys­tem demands that peo­ple who are most in need of help are least like­ly to get it in any time­ly fash­ion, because it takes so much per­sis­tence, jar­gon, and inside knowl­edge to get any­where. If you can do all those forms and gath­er all the records and so on by your­self, I don’t know that you should count as dis­abled! Even peo­ple with good sup­port in oth­er ways don’t always have some­one will­ing, able, and per­sis­tent who can and will spend the hours and hours of time to push a claim through.

I start­ed the fil­ing process for one rea­son: I need­ed sta­ble access to health­care so that I could get well enough to go back to work. Five years down the line, I’m not at all sure that I will be able to return to work, because my health has dete­ri­o­rat­ed so much that it may not be pos­si­ble to get back to an “abled” state. How many years of pro­duc­tive lives are being in the U.S. wast­ed for lack access to health­care?

I get annoyed every time I hear a talk­ing head refer to plans to “insure” every­one. That isn’t what we need! Plen­ty of peo­ple have health insur­ance and still don’t get the actu­al health care they need because they can’t afford the co-pays, or the insur­er won’t cov­er a par­tic­u­lar drug or ther­a­py, or there are pre-exist­ing con­di­tion prob­lems, or…

We need health care. Not divid­ed up by age (this for kids, that for seniors, some­thing else for work­ing age peo­ple, oh, right, the dis­abled here) by uni­ver­sal car, the same care for every­one, for the whole body, cra­dle to grave. (Who ever decid­ed that eyes and teeth should be sep­a­rat­ed out, any­way? That’s stu­pid.)

I read an art­cle about San Francisco’s health pro­gram last week–if I can find a link I’ll add it lat­er. It does just what I described, from what that arti­cle says. I don’t know how much it costs to join, but appar­ent­ly there’s a lot of out­reach to peo­ple who are oth­er­wise unin­sured. There are no pre-exist­ing con­di­tions.

Does any­one know of pro­grams like San Francisco’s else­where in the U.S.?

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Shouldn’t Be This Tired

The girl had an appoint­ment at the doctor’s office today, then we had to go to Children’s Health­care of Atlanta to have an EKG and lab work done–just part of the nor­mal mon­i­tor­ing for some of her meds. And that’s all we did today, oth­er than try­ing to pick up my meds (which weren’t ready) and pop­ping by the mail­box.

So why did I col­lapse by the time we got home, and why do I still have a damned fever?

It’s ridicu­lous­ly frus­trat­ing to be exhaust­ed from fair­ly non-task­ing errands like that. This kind of thing is why, no, I can’t work, at all, out­side the home. It’s why I couldn’t man­age “nor­mal” col­lege class­es.

My SS claim is still in process. They told me last year that I should have a hear­ing sched­uled around March 2008. When I called back in March, I was told to expect to hear some­thing in 90 days or so. Now they’re say­ing maybe next year some­time! So I wasn’t sur­prised to read that Geor­gia has the worst back­logs in the nation right now, aver­ag­ing 30 months from the time of the sec­ond denial before an admin­is­tra­tive law judge hear­ing is sched­uled, accord­ing to the SSA rep­re­sen­ta­tive with whom I spoke today. And they’re deny­ing more and more peo­ple at the ini­tial fil­ing and first appeal, too, just to try to get rid of us.

If I thought Cana­da would let me emi­grate, I’d be there.

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No! Don’t Wanna!

My ther­a­pist, L, is no longer with the prac­tice I’ve been see­ing for the last cou­ple of years. It took a year to get to her — first, they assigned me to M, who was a total pain in the ass and didn’t lis­ten. Not that I was inclined to talk to her, any­way. And she didn’t return phone calls.

So I final­ly got beyond the “get­ting to know you” stage with L, and she under­stands our fam­i­ly and some his­to­ry and such, so she can put things in con­text. And I think they fired her! They weren’t even going to tell me she wouldn’t be there for my appoint­ment this evening. I called to ask her some­thing and her num­ber had been dis­con­nect­ed, which prompt­ed me to talk to the office idiots.

I. Am. Not. HAPPY! It’s a major PITA to break in a new ther­a­pist. I mean, it is for any­body, but when you have a bunch of inter­lock­ing issues and heavy his­to­ry crap, then you add in chron­ic illness/disability, and just for fun mix in that whole bi/pagan/poly thing, believe me, it’s worse. And some ther­a­pists aren’t up to it. In fact, the one I saw a cou­ple of times before see­ing some­one at this prac­tice told me and Sam at the sec­ond ses­sion that she was in over her head and need­ed to refer me else­where.

Oh — the new per­son doesn’t do evening appoint­ments, either. Which means that the only way I can be sure of get­ting there is to take a taxi, as I have not had good expe­ri­ences with using MARTA for any­thing time-sen­si­tive. Expen­sive, but not as dif­fi­cult as hav­ing Sam take time off from work. But L coor­di­nat­ed my appoint­ments with Katie’s appoint­ments with anoth­er ther­a­pist in the same prac­tice, which was nice. Who knows if this one will be as help­ful?

Grrrr.

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At Fibrant Living — Working?

Today’s post is at Fibrant Liv­ing. I want to talk about work­ing with a chron­ic ill­ness, or return­ing to work after you’ve devel­oped one. Please com­ment there!

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Another week, another 1/4 semester

I’ve suc­cess­ful­ly com­plet­ed 1/4 of the semes­ter! With­out using any kind of accom­mo­da­tions!

I real­ize that’s a fair­ly piti­ful thing to cel­e­brate, but I have to take what I can get.

The project man­age­ment course is actu­al­ly giv­ing me use­ful expe­ri­ence using MS Project, along with infor­ma­tion that is applic­a­ble in the “real world.” There’s also a ridicu­lous amount of ver­biage that I’ve nev­er heard used in the work­place, but maybe there’s been some sort of PM rev­o­lu­tion since 2000. I doubt it, but it’s pos­si­ble.
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Further Prof of Insanity: Blog365

I got through NaBloPo­Mo, as ridicu­lous as it was to com­mit to post­ing at least once a day for a month. So of course that small suc­cess has led me, in a moment of more-than-usu­al-luna­cy, to sign up for Blog365 (oth­er­wise known as “Out of the Fry­ing Pan, Into the Fire”).
Blog365
The pur­pose is fair­ly clear: to post at least once every day of 2008. Feb­ru­ary 29 is a “rest day.” Posts may be writ­ten on any site, rather than stick­ing to just one blog, so I’ll try to spread them around on mine/ours. If I can’t get some­thing on the actu­al site on a par­tic­u­lar day due to net con­nec­tion issues or what­ev­er, I have to write (yes, write! like, cuneiform or some­thing!) a jour­nal entry and trans­fer it to a blog as that day’s entry.

It would be far sim­pler to have a sys­tem of some sort. Maybe I’ll cre­ate a rota­tion:

  • Fibrant Liv­ing — health, liv­ing with a dis­abil­i­ty, pod­casts
  • Acad­e­my Car­i­tas — home­school­ing, edu­ca­tion, col­lege
  • House Fire­heart — polyamory, par­tic­u­lar­ly my and Sam’s approach to it
  • Heart­song Hand­i­crafts — home of my orig­i­nal needle­work pat­terns, and soon to be home for the rest of my stitch­ing infor­ma­tion
  • Cyber­stalked! — inter­net safe­ty and pri­va­cy issues
  • Cyn­thia Armis­tead — my pro­fes­sion­al port­fo­lio, where I put the geeky stuff
  • Ene­my of Entropy — here, of course, where I put gen­er­al stuff, book reviews, and the like.

Hope­ful­ly there will be new pod­casts up soon. There will def­i­nite­ly be more music, as we have that love­ly con­cert piano we received via freecy­cle all repaired and put togeth­er. It’s beau­ti­ful and sounds great! Not at all bad for one dri­ve to pick it up and less than $200 in repair fees! (Sam want­ed to just take it to the near­est autho­rized repair cen­ter rather than doing it our­selves.)

2007 wasn’t a stel­lar year, but nei­ther was it ter­ri­ble. Sam has a steady, secure job that he enjoys, in an orga­ni­za­tion that’s allow­ing him to advance. , Katie had a lot of health prob­lems, but I’m hop­ing that we’re on the right path to resolv­ing them. Shel­ley passed away a lit­tle shy of her 18th birth­day, but since we’d been told in 1999 that she only had a year (at most) left, we felt that we’d got­ten an “extra” 8 years with her any­way. Kioshi has grown into a nice com­pan­ion, too.

We real­ly kept to our­selves a lot through the past two years. When you’ve been betrayed and hurt as deeply as we were by our for­mer housemate’s sud­den crazi­ness in 2006, there’s a lot of heal­ing to be done. I don’t know if I’ll ever approach Thanks­giv­ing with­out trep­i­da­tion again, but we had a good one any­way. The stress did con­tribute to the dete­ri­o­ra­tion of my health, and that does make it hard­er to get out. We’re work­ing on it, though. We cer­tain­ly learned who our true friends were, and we’ll nev­er for­get that.

So on to 2008, which we hope to be full of more time with friends, bet­ter health, much more music, Katie spent last night and almost all day today with friends from the school she was attend­ing as well as her new beau. Sam and I spent the day gam­ing, upgrad­ing some web sites, eat­ing good food and watch­ing movies. If it’s true that what­ev­er you do on Jan­u­ary 1 indi­cates how your year will go, we should be just fine.

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Rumbles from the Recliner

Not from the grave, oh no, not yet!

It’s been too long to do a real “this is all that has hap­pened in my life.” Writ­ing it would exhaust me, and read­ing it would like­ly bore you. If you want to know about some­thing in par­tic­u­lar, please ask.

I’ll be post­ing a few things short­ly that I had “ready to go” and just didn’t post, for what­ev­er rea­son.

The girl is enjoy­ing life as a teen, or as much as any teen can. I wouldn’t want to go through those ups and downs again! She’s always my most pre­cious, beau­ti­ful God­dess gift baby, even if she will be 17 this week. That’s our “big thing” right now.

She con­tin­ues to amaze me with her cre­ativ­i­ty. She’s the head pho­tog­ra­ph­er (or what­ev­er they call it there) for the year­book, which has had her run­ning around to all man­ner of events for which there must be pho­tos! Now! Yes­ter­day! Couldn’t they hold Home­com­ing in July? Come ON peo­ple! And she loves it. She com­plete­ly filled her 1GB com­pact flash card with live pho­tos from Fri­day night’s foot­ball game, then had to switch to her small­er, old­er card and be very judi­cious in her shots to fin­ish the game. She obvi­ous­ly needs a much big­ger card!

Yes, she uses her own equip­ment. Her cam­era is head and shoul­ders above the qual­i­ty of those the year­book staff owns, even the few dig­i­tals. That makes sense, con­sid­er­ing the expense of them, the time it takes to real­ly learn to use a dig­i­tal SLR prop­er­ly, etc. Most of what they have are point-and-shoot 35mm film cam­eras, which aren’t such big a deal if a stu­dent los­es or dam­ages them.

Sam is still work­ing at the same place, help­ing peo­ple with com­put­ers and net­work­ing and phones and so on—even A/V equip­ment at times. If you can plug it in, his depart­ment is the one every­body calls first for help. I’m sur­prised jan­i­tors don’t show up with vac­u­um clean­er com­plaints some­times (and I don’t know that it hasn’t hap­pened at some time at the past).

The help­ing peo­ple part is, of course, the most impor­tant thing. He loves it, he does it well, and he finds wells of patience that must come from Some­where Else.

I’m reg­is­ter­ing for fall class­es (DeVry is on an odd sched­ule, but you may have noticed that). We’re look­ing for a place to move to, but not find­ing what we can afford where we want to live. I sup­pose that’s an eter­nal lament, isn’t it?

I’m still a gimp, and now have a (man­u­al) wheel­chair of my own. I real­ly need a ramp for the front entrance of the house, but I’ve delayed try­ing to have one put in here since we want to move.

We’re still in lim­bo with Social Secu­ri­ty. In Geor­gia, the wait to have your case heard by an admin­is­tra­tive law judge is (accord­ing to the SSA office near me) about 36 months, aver­age. That’s the lev­el I’m at now.

It’s damned frus­trat­ing not to be work­ing, not to be able to work. I don’t want to be on dis­abil­i­ty or need it! I want to find a job I can do for a decent wage!

But I’ve had yet more icky health stuff, so… Sam and Katie are more of a bless­ing than I can say, cer­tain­ly far more than I deserve.

I real­ly want music. I mean, to make it. Noth­ing else seems to be able to replace hav­ing a piano (not a lit­tle key­board) in my home. That’s when I sing the most, as I accom­pa­ny myself. (I don’t play all that well, so I don’t play in front of any­one else.) I was think­ing of tak­ing a new vocal class Elise Witt is offer­ing, but it con­flicts with a fam­i­ly com­mit­ment.

I’m re-read­ing Madeleine L’Engle’s Cross­wicks Jour­nals and poet­ry as I mourn her pass­ing. Yes, there will be a sep­a­rate post about that, but for now, I’ll leave you with a tiny quote from her:

I learn my lessons slow­ly, sel­dom once for all. Con­tin­u­al­ly they have to be learned and re-learned, not with solem­ni­ty, but with awe and laugh­ter and joy.

Namaste,
Cyn

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