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.

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.)

Con­tin­ue read­ing “Three Good Things!”

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.?

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.

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.

Online Courses Not for Everyone

It should­n’t be sur­pris­ing to any­one that edu­ca­tion is not a “one size fits all” endeav­or, online or else­where. This bit about learn­ing styles, how­ev­er, did sur­prise me:

“Cor­re­la­tions between learn­ing styles and suc­cess in dis­tance edu­ca­tion have shown to be incon­clu­sive,” Strick­land1 said. “How­ev­er, one com­mon theme reap­pears: the suc­cess­ful traits of a dis­tance learn­er are sim­i­lar to the suc­cess­ful traits of an adult learn­er in tra­di­tion­al edu­ca­tion­al set­tings.”

The arti­cle claims that there’s “a mere 30 per­cent of dis­tance learn­ers actu­al­ly com­plet­ing their cours­es.” It goes on to men­tion that “Dis­tance learn­ing allows the learn­er to over­come tra­di­tion­al bar­ri­ers to learn­ing such as loca­tion, dis­abil­i­ties, time con­straints and famil­ial oblig­a­tions,” but I’m won­der­ing how much they real­ly paid atten­tion to the fact that those of us who enroll in online class­es are often those who have the most bar­ri­ers to stay­ing in school? I take such cours­es because of phys­i­cal dis­abil­i­ties, but I’ve still had to drop my class­es repeat­ed­ly because of ill­ness. There are still dead­lines, and in fact some online cours­es are “com­pressed,” mak­ing dead­lines even more impor­tant.

Strick­land also men­tions “the lack of insti­tu­tion­al sup­port and iso­la­tion involved in the nature of online cours­es.” I’m not sure what kind of sup­port is miss­ing, com­pared to face-to-face class­es, but maybe that’s because I’ve nev­er sought out any “insti­tu­tion­al sup­port.” Does she mean tutor­ing?

At one point, though, Strick­land refers to “intro­vert­ed per­son­al­i­ties” and “shy indi­vid­u­als” as (appar­ent­ly) being syn­ony­mous, and not get­ting involved in the typ­i­cal class­room set­ting. That’s a pet peeve of mine. Intro­verts are not nec­es­sar­i­ly shy! We’re self-con­tained, and most of us usu­al­ly put more weight on our own val­u­a­tions than those of oth­ers, so we aren’t as vul­ner­a­ble to peer pres­sure. I miss good class­room dis­cus­sions, as I’ve nev­er seen any online class that has man­aged to pro­voke any­thing close. But then, I did­n’t expe­ri­ence any good dis­cus­sions in face-to-face class­es at DeVry, and very, very few at SPSU. In fact, I heard more than a few of my fel­low stu­dents at SPSU com­plain­ing about non-tra­di­tion­al stu­dents, in par­tic­u­lar, want­i­ng to “talk too much” in class. They clear­ly want­ed less dis­cus­sion, not more!

Quotes from Researcher Finds Not Every­one Can Suc­cess­ful­ly Learn Through Online Cours­es, Despite Their Pop­u­lar­i­ty


1 Shaw­na L. Strick­land, clin­i­cal assis­tant pro­fes­sor in the Uni­ver­si­ty of Mis­souri School of Health Pro­fes­sions

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.
Con­tin­ue read­ing “Anoth­er week, anoth­er 1/4 semes­ter”

Homeschooling High School in College?

It’s be SO long since I updat­ed things here! Not that I think any­body real­ly missed me, but still, I should have kept it up a bit bet­ter.

Katie tried attend­ing a good high school near us, and loved it. She got great grades, was cho­sen to work on the year­book (it’s a very com­pet­i­tive process there), and was even made the chief pho­tog­ra­ph­er right away! She was also get­ting involved in oth­er activ­i­ties, and she made some good friends. She real­ly loved the art class­es, in par­tic­u­lar.

Unfor­tu­nate­ly, her health suf­fered. She has severe rest­less leg syn­drome, fibromyal­gia (which caus­es sleep prob­lems), and tru­ly hor­rif­ic migraines in addi­tion to being aller­gic to all kinds of things. The migraines aren’t well-man­aged any more, so that she has a migraine almost every day despite tak­ing Trilep­tal as a pre­ven­tive. She’s had to use her res­cue med­i­cine so much that it’s no longer very help­ful, either. She just can’t get any decent sleep, thanks to the RLS and fibro, which means that she needs a min­i­mum of ten to twelve hours every night, and still wakes up unrest­ed. And our insur­ance has gone stu­pid, repeat­ed­ly refus­ing to cov­er her aller­gy med­ica­tions, in par­tic­u­lar. 1 Right now, they’re refus­ing to cov­er Provig­il, which was the only thing keep­ing her awake enough to even con­sid­er attend­ing school. She’s under doc­tor’s orders to stop dri­ving until the sleep sit­u­a­tion is ame­lio­rat­ed, and has been for some time, so she’s been delayed in learn­ing to dri­ve and get­ting her license.

So she’s back at home, which is a real dis­ap­point­ment to her. We’ve decid­ed to try mak­ing the best of it, and focus on the good things. For instance, she’s no longer held back to any­one else’s learn­ing pace, and she does­n’t have to jump through bureau­crat­ic hoops. She can learn when­ev­er she is awake, hon­or­ing her body’s need for more sleep than most peo­ple.

She wants to take col­lege class­es online, which is how I’m man­ag­ing to con­tin­ue my edu­ca­tion despite health prob­lems. I think it’s a good idea, so now we’re con­sid­er­ing schools and mon­ey. While the Uni­ver­si­ty sys­tem schools here in Geor­gia tech­ni­cal­ly have all their core class­es online, the real­i­ty when I attend­ed South­ern Poly was that the entire school usu­al­ly had only one or two seats for any par­tic­u­lar course, and of course those seats were tak­en imme­di­ate­ly.

We’d love to hear about the expe­ri­ences of any oth­er home­schooled teens who are fin­ish­ing high school in col­lege, par­tic­u­lar­ly those who are tak­ing class­es online.

Her even­tu­al goal is art school, and while there is a local school that has an online pro­gram, I just don’t see how it’s pos­si­ble to learn some things through the inter­net. Nei­ther does she. So we’re also look­ing for good art class­es to sup­ple­ment what­ev­er she does online. We’re in Decatur, and since nei­ther she nor I are dri­ving, close is good. MARTA acces­si­bil­i­ty is absolute­ly nec­es­sary!


1 hey insist that every­body should be just fine with Clar­itin, which is avail­able over-the-counter. Not so!