Out of Sight, Out of Mind? Off the Web, Off our Minds?

IDEA, the Individuals with Disabilities Education Act, is a law that guarantees disabled students a Free Appropriate Public Education. We knew that law inside and out by the time Amigo turned 21 and graduated from both our local public high school and the state school for the blind. Our state department of public instruction (Wisconsin DPI) and the federal department of education both had extensive information on the law.

On Wednesday, a search for information reached this message.

I tried again later. First, I found a page that suggested “Information about the regulations of the Individuals with Disabilities Education Act that was posted on this site has now been moved to a new location. To access this information and much more, please visit: http://idea.ed.gov.

On the idea dot ed dot gov, I found this message. The servers hosting our idea.ed.gov website are experiencing technical issues. We are working to resolve this issue, please check back later.

These two might be outdated, I thought. The first site references the year 2004, after all., the year of major updates to special education law. The links could be 12 years old.

I found an archived report from the 25th anniversary of IDEA.

I found a text file with a copy of the law as it was updated in 2004. Maybe I should bookmark that one.

I found an intact reference to FERPA, the Family Educational Rights and Privacy Act.

The link on the Department of Education page has a red box announcing “Disclaimer!” and leads not to an official page, but this one. It’s sponsored by a group called the Center for Parent Information and Resources. I’d have to look more closely at the organization before trusting their information.

I then found a pdf document 159 pages long with the same information in Major Legalese as the earlier bookmark.

Every other search I made landed on the tech diff statement.

This follows censorship (yes, censorship) of other government informational pages such as information about human causes of climate change. Some of Wisconsin’s “official” web sites have also pulled information that doesn’t jive with our governor’s narrow mind or that of his sponsors.

What’s going on? I’m not sure I want to know.

I know this much, though. We, the people, in order to maintain a flawed but functioning republic, will continue our quest for information. We’ll continue seeking information, and we’ll continue providing information. We’ll also continue verifying and confirming statements. For example: just because Ms. Conway makes a statement on camera three times doesn’t make it true (RIP, Bowling Green massacre victims). 

In this case, out of sight (or out of website) doesn’t mean out of mind.

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Attitude. And a blind sense of humor.

I almost – almost – feel for the director of Amigo’s barbershop choir. But really, he set himself up for this one.

Director Man had the risers set up, the festive scenery in place, and the lights on the choir. He stepped back, looked over the group, and asked, “Is there anyone who can’t see me?”

Without a pause, Amigo raised his hand, the hand not holding his white cane, and the choir erupted with laughter.

They were still chuckling when I arrived to pick him up two hours later. Spark plug, indeed. They’ll have a hard time picking a new recipient for that award!

Amigo in his Elf costume

Amigo in his Elf costume

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Has the calendar regressed? This state senator has.

Chuck and I helped the local arts community by writing a column for the newspaper about Amigo and the barbershop chorus in which he sings. He enjoys rehearsals, thrives on the music, and gets totally psyched up for the performances. We were happy to support them with our column.

The piece apparently got picked up in a Madison newspaper. How do we know? Well, Chuck got a card from the guy who represents our district in the State Senate. We’ll call him Senator Throwback. The card enclosed a copy of our column, and carried a message that said “Saw this in the paper and thought you might like a copy.”

Nice, right? Maybe thoughtful? Politically expedient, too, eh? Almost. It’s likely that one of Senator Throwback’s staff pointed out the article and took the time to find our address, and on and on. We know that. But anyway, how did something that insignificant make the blog?

We co-wrote the article. Both of our names and both of our pictures accompanied the piece. We wrote it together. Senator Throwback addressed the article to Chuck and only Chuck. In his eyes, evidently I don’t exist.

Make no mistake, folks: this omission counts. By leaving one author, the female author, off the note, Senator Throwback made it clear that I do not exist for him. That’s too bad for him, though, because he’s forgotten one very important point: my vote counts exactly the same as Chuck’s does. And Senator Throwback isn’t likely to get mine next election.

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Captions please, Candidates.

The airwaves are full of debates and speaking events and predictions and (dare we say it) television commercials in the markets headed for primary caucuses and elections. There is one thing wrong with many of those TV ads. No, it’s not that they exist or that they’re misleading (although that can be true). I’m not even referring to the shady third party issue ads that crowd the screen all too often.

I’m talking about closed captioning.

The FCC has rules and guidelines for captioning of television shows, whether recorded ahead of time or aired live. Commercials, however, are still inconsistent. Some have captioning, some don’t. And many, all too many candidates bypass the time and the cost of captioning their commercials.

Think of those with hearing losses. Baby boomers raised on loud music, senior citizens with age-related hearing loss, millennials brought up on ear buds – all of these people are likely to miss the details in a well-made commercial. Then bring in those hearing problems not listed above — people with hearing aids or cochlear implants for whatever reason, from illness or hereditary conditions, from environmental problems like combat noise, among others. The size of the group grows.

Think about it. If you’re a candidate or working for a candidate, do you want to leave all of those voters out of your audience? That’s what happens if the ads aren’t captioned.

Closed captioning isn’t free. It costs money, and it costs time. However, paying the captioner and taking the time to load captions into an ad are investments. If those captions help a candidate to connect with voters, this additional cost of doing business can reach voters who may not have heard the candidate’s message – literally.

Readers, do you watch television with captioning on? Do you notice when a show or an ad has captioning – or doesn’t? I’d love to hear from you in the comments.

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Music soothes.

Like the rest of the world, we had a hard time last week, listening to the news coming out of San Bernardino, California. Two circumstances brought it close to home: that the shooting was in a center that served adults with developmental disabilities, and that a school for the blind was directly across the street.

News folks talked to a leader at the center from the blind, announced that no one there was hurt, and they had in fact sheltered some who ran from the shooting site. We felt a small amount of relief.

Then we took a collective deep breath and went on with our lives. Amigo put on his costume for the Barbershop Bistro show, and we headed out of the house. Chuck and Amigo left their phones behind. I set mine on vibrate and tucked it deep in my purse. When we arrived, we set the sad world news aside for a little while.

The show had a 1940s theme. Here's Amigo.

The show had a 1940s theme. Here’s Amigo.

Just a few weeks earlier, we’d been at the local museum for the Festival of Trees. Can you find Amigo in the group? At first, neither could I. He fits in very well.

Jingle, Jingle, Jingle!

Jingle, Jingle, Jingle!

Music soothes. It can’t take away the violence, but it can take us out of the big bad world for a little while, lower our blood pressure, and celebrate being together with those we love.

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ADA is 25 years old!

I grew up with a minor hearing loss in an age where those with “special needs” were segregated from the masses. I wasn’t channeled into special education, thank goodness. I succeeded along with my friends. I even managed to earn a college degree in music, despite a certain professor who insisted that my hearing loss meant I shouldn’t be in a conservatory of music at all.

Years and years later, a principal at Amigo’s school glared at me and growled, “Don’t throw ADA at me; it makes me angry.” Angry or not, we threw IDEA at him and he had to follow the law.

What’s ADA? What’s IDEA? Why are they important to me and important to my family? I just posted on Connections Academy’s national blog. Read and enjoy!

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Another Use for a Coat Hook

I might call it repurposing. Amigo just called it “lunch”. We had to run an errand in Green Bay, so we took our Fun Day Friday lunch to a wonderful family restaurant across the street from Lambeau Field. We admired the decor (lots of Packer history) and ordered good food (and we went easy on the trainee). Amigo enjoyed exploring our little booth, including the coat hooks on the side.

It's July. We didn't have coats.

It’s July. We didn’t have coats.

A hook is a good place for a white cane, too.

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Measles?

I searched my archives for measles or immunizations, and the only related topic I found was flu. I get a flu shot every year. Amigo gets one every year. La Petite, now that she has medical coverage (Thanks, Mr. President!), gets her vaccine, too.

It’s not influenza that’s on people’s minds today. It’s an illness that was thought to be eradicated in the United States: measles.

I remember getting a mumps shot when my friend Julie had mumps. The vaccine was a new one; it wasn’t routine yet. It must have worked; no mumps for me. I remember getting a rubella vaccine when I was at the hospital after giving birth to La Petite. Routine blood tests showed I wasn’t immune, and I got the shot before going home. But measles? No memory of the illness or the shot.

People born before 1957 are considered immune because they were most likely exposed when they were young. I’m a 1960 baby boomer. Where does that leave me?

I did what a lot of baby boomers do: I emailed my mother.

According to Petunia, I may have had a mild case of measles when I was very young. She followed up by saying she remembered getting me a measles vaccine, but doesn’t have a written record.

So around and ’round and ’round I go. Do I need the shot? Nobody knows. While I dilly dally about getting a lab test to find out yea or nay, the city health department is setting up a vaccine clinic early one morning next week. I might just give in, get up, and go. It can’t hurt. Well, it could hurt… never mind.

 

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The O.K. Chorale Runs Errands

I had a few alternate titles, and none of them really worked. The O.K. Chorale Holds Up a Pharmacy didn’t sound quite right. The O.K. Chorale goes out for Drugs didn’t really make it, either. The O.K. Chorale Stops the Pharmacist in his Tracks is a bit of an exaggeration. Not much, but a bit.

You’ve already guessed, my friends, that we had trouble once again with the Pharmacy That Shall Not Be Named. This time it wasn’t the people – not totally, anyway. For the most part, it’s the system. Or should I say systems, plural? Maybe so.

We rolled up to the hitching post, settled our horse (a Subaru) in a stall, and split up to make better time. Chuck went one direction to get a quart of milk. I followed Amigo to pick out a package of lip balms. We converged together at the pharmacy window. We’d just approach one by one, and we’d be done in a flash. Right? Wrong.

One register wasn’t working. Its card reader was out of service, so that window could only take cash. Works for me, I though, and Amigo, too. No problem. But (wait for it) — there’s more.

All in good time, one of the assistants called us up to the window. She’d already pulled out meds for all three of us. Sad, I guess, that we’re such regular customers that she knows our names, but I’ll give her points for customer service.

But as luck would have it, anything that can go wrong will go wrong. Amigo’s prescription comes in two bottles, and they’d only filled one. I’d called in the numbers for both bottles, so there was confusion. Amigo was a strong self advocate and reminded them that he doesn’t like the childproof caps and that the higher dose capsule goes in the bigger bottle and the lower dose in the short one. They know this. It’s all on his record. But somehow, half the prescription got lost in the shuffle, and the sizes and caps on the bottles was the least of their worries.

So instead of Amigo going first, I stepped up to the second window and received my one prescription. One? I thought it was two? When I called to check, the staff member on the phone told me there was another medication coming due. As the line got longer behind us, I said never mind, don’t worry about it, I’ll get it at a later date. It’s not urgent. Let’s check out now before the milk Chuck bought starts to curdle.

While all this was happening at my window, Chuck handled his order, the fastest of the three. Amigo was still waiting for the pharmacist to rush through filling what should have been done already. I thought I had sorted through my own one lamp or two dilemma when the pharmacist came over for the required Consultation. He looked at my papers and said “One? Isn’t there a second?” Apparently, the paperwork was such that it indicated a second medicine. One if by land, two if by sea, and meanwhile, the line was getting longer and longer behind us.

Finally – and I do mean finally! – Amigo and I checked out and left. Amigo got his chap sticks, and I got away without yet another stupid small single use plastic bag. I only had to say “I don’t need a bag” three times.

With a deep breath, we mounted the patient horse (Subaru) and headed home. And I thought to myself, “Self, wasn’t there a mixed up text message regarding a medication earlier this week?” I’d gotten a phone call from the doctor’s office saying that I’d requested a refill on a powerful medicine I’d just begun taking, and they were worried. Was I okay? Um, yes, I was fine, and I hadn’t requested a refill. When I called in later, pharmacy people chalked it up to a mix up in the “Get your Refills by Text Message” program.

At long last, we made it home. I put excess paper (most of it ads for the text message refill program) through the shredder, placed my meds and Amigo’s in their correct spots in the medicine cabinet, and left Chuck to his own devices.

Dear Pharmacy That Shall Not Be Named; I hope the O.K. Chorale can stay far away from your window for a long, long time. Don’t bother to text. It’s not you, it’s me. No, I have to admit, it’s you.

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