What will it take?

I came across two disturbing news items today. One is a of a diabetic man who was tossed off an Amtrak train in the middle of a forest by personnel who assumed he was drunk, when when he was actually suffering diabetic shock. The other is a report of a police officer who killed a suspect with cerebral palsy. At least the officer has been found guilty of negligent manslaughter and admits that he mistook the young man's jerky motion for threatening behavior.

If only this sort of story was an anomaly instead of one the constant fears of people with disability, that disability will be mistaken for disobedience and disorder. I don't expect everyone to know about every disability. But rather obviously, there are too many people who know essentially nothing about any disability and immediately interpret difference as danger. The result is that people get killed for spasticity, shot for being deaf, abandoned or jailed or tasered for diabetes and epilepsy, deported for developmental disability.

I don't for a moment think that anyone feels good or justified after making such terrible errors in judgment. So wouldn't it be a good idea to give some training to people who deal with the public? If there was at least some guarantee that an effort would be made to read medical alert bracelets, it would be a step in the right direction.

Hey, what happened to Eschara?

I really liked Eschara. People sent in pictures and stories about scars they had gathered in life, and the general sense was of pride in life well lived. Every few weeks, I went Eschara to check out the new additions.

And now? Um. I think it is in Thai. And I have no idea what it is about, but even the archives are gone. How does that happen? Anyone know?

Plus!

I am so easy when it comes to entertainment. A town half an hour away just got a brand-spanking new HEB Plus!, and I have so wanted to go to one for, oh, ever since they first started being built here and there. But more there than here, and I wasn't about to drive 2 hours just so I could go to what I was hearing was the most wonderful grocery store ever. But, dang, it's the most wonderful grocery store ever, and the closest I was getting was the TV commercials.

Until yesterday! Yay, I drove over there on the way back from work, me and MD, since we both work at the same place. First thing, there was lots of handicapped parking. Second thing, it seemed to all be full, except for one spot a bit up an incline. But that was the best we were going to get, so we took it.

We had already agreed that if there were no shopping scooters, we'd just go in the door and look to see how big the place was, but not actually try to do any shopping. However--get this!--despite there being so many gimps at the store that they had run out of gimp parking, there were still plenty of charged-up, ready-to-go, scooters! Plus!, indeed! So we each got a scooter, which was astounding, because usually we only get one and have to take turns.

And the aisles were wide!

And there were so many other people on scooters, it was like a convention.

And the people who weren't on scooters were all smiling and saying "Oh, excuse me, let me move out of the way." This even though they were coming across us scooty types on every aisle. Once, after I had put something in my cart that made it hard for me to see what sort of clearance I had, I clipped a display rack, sending manual can-openers tumbling to the floor. Three young men, none of them employees, rushed over and started picking them up, assuring me that they had it under control and not to worry.

I drove down the baking goods aisle, and came across something that made my eyes start to tear up: a whole section of GF cookies and baking mixes. With my favorite ginger snaps that must be torn into immediately just sitting there, waiting for me. I took them home and had my way with them.

OK, there was one guy in the entire store who seemed completely oblivious and constantly kept wandering over to where I had to be creative in order to miss him, but maybe he was trying to flirt? If so, he should have made eye contact, but as it was, he was just irritating. But not so irritating that my trip was spoiled.

Oh, then the scooters took us back up the incline to my car. And that was good, because you really can't get up hills very well by foot with only one properly working hip.

MD and I have decided to go back once a month. That's something, because she usually hates big stores and crowds.

Same old same old

Jeesh, I said to M.D. today, there are never any films about what it's really like to live with disability. For instance, there could be a film about someone applying for disability.

She doesn't miss a beat:

"They already made that film--Groundhog Day. Everyday, you wake up and have to fill out the same forms."

Congrats to the New Doctor

I am impressed with Kellie Lim, who was just graduated from medical school at UCLA. When I think of all the people who must have stood in her way, especially while she was getting her education, I am impressed with her ability to get things done. The biological sciences department at the institution where I work is notorious for declaring ahead of time that people with severe physical disabilities simply can't do the lab work. I'll be sure to pass Dr. Lim's story on to them.

PE--persistently evil?

BugsMom is wondering what sort of difficulty she will face getting Bug proper adaptive physical education. Good luck with that. I can only hope that things have changed for children with EDS over the past 15 years.

Before MD was diagnosed with HEDS, she was seeing a podiatrist who, not otherwise knowing what he was looking at, was at least able to say that under no circumstances was she to either run or jump until she had finished growing. (At that point, she was walking on the outsides of her feet, with her soles turned inwards.) Armed with this doctor's order, and soon by other doctors giving the same order, we were repeatedly assured that she would only be given activities that were safe for her to do.

That never happened. She constantly was told to do what the other kids were doing, which was always running and jumping. There were so many injuries, I begged that she be allowed to substitute some other activity for PE. Eventually, the school district conceded, and I paid for activity lessons privately, getting the teacher to sign off on the proper forms. I always thought it was foolish to require a child who had to spend an hour every day doing physical therapy to also have to do a "proper" activity, but that was as far as I could get a couple decades ago. It wasn't helped by the fact that, back then, even though I had access to the internet, there was virtually no information on EDS available on the web, and even less on IEP. MD's school district made it plain that no "special" services were going to be offered to her unless she transferred to the "special" school.

It didn't help that the best advice the doctors could come up with regarding HEDS was to avoid doing anything that put impact on the joints. It was hard to go to the school with such vague recommendations. It also didn't help that I was a single parent, trying to keep things together and still expected to somehow find time to jump through each and every one of the school district's infinite number of hoops. Or that genetics had caught up with me and I was also falling apart physically.

I hope that schools have changed, and also that the newly available information makes some difference. While the opportunity for education and socialization in the schools is wonderful, when MD and I look back on her childhood, neither one of us feels any nostalgia for the school bureaucracy and its drive to make sure all the pegs were round.

A must read

I found, via Grand Rounds, a post at Universal Health all about the problem of Villainizing the Vulnerable in medical care. I have to say, I had never before thought of the problem in terms of Milgram's Obedience to Authority, but it sure does explain a lot.

Don't draw the wrong lessons from Virginia Tech's misfortune

What happened Monday at Virginia Tech was deplorable. I have nothing but concern for the students of that institution, and for their friends and family. Well, there is something else. They have my respect.

From everything I have read, not only did the students and faculty behave bravely while under attack, students and faculty had been as proactive as they could. Professors made a point of referring him for counseling and students tried to reach out to him. Seemingly, everyone recognized that he was greatly disturbed.

And that is what the news is focusing on. Mentally-ill person on campus! The evil ADA won't let schools and workplaces throw out the crazies! Virginia had just passed a law that colleges can't expell students simply for having a mental illness or seeking counseling. You know it's true and important, because the New York Times says so. Quick, everyone, jump on the Lock Away the Nutters bandwagon while there's still room! After all, we just can't ever know which one of them will "snap."

I suggest that the NYT take a deep breath and consider the real problem. The real problem? How about that Cho had been picked up for stalking two women? That he had been tossed out of class for taking inappropriate videos of female classmates and intimidating them? Yes, Cho had committed crimes which were all the justification VT would have needed to expell him. So why didn't they? Apparently, no charges were filed, the girls involved being simply relieved to put distance between themselves and him. Did they get any encouragement from VT to file charges? I'm guessing the answer to that is "no." One campus counselor is quoted as saying "It is very difficult to predict when what someone perceives as stalking, is stalking." And the hospital that ultimately evaluated Cho as posing a danger to others also let him go.

In the light of recent blogosphere talk about Kathy Sierra and the Imus incident, I would hope more people are alert to the degree to which threats against women are blown off as irrelevant, with women being advised to simply grow a thicker skin. What if, instead of considering Cho's actions toward women as vague and not worth follow-up, VT had been encouraged and allowed by law to expell Cho and press charges for repeated intimidation?

OK, you're not convinced. You really don't care if a few, or even many, women are made to fear for their lives by a creepy guy who stalks them and takes unauthorized pictures up their skirts.

How about that he was an arsonist? What was wrong with VT's administration or, perhaps, its police department, that it didn't act immediately to have a fire bug removed?

The point is, we don't need to abandon recent efforts at inclusion and de-stigmatizing of people with mental illness. What we need is to take violent crime seriously, and understand that violent crime does indeed include intimidation, stalking, and arson. They aren't youthful errors. They aren't jokes. They aren't just little things that should be ignored. They are steps on a ladder of violent escalation.

I hope that all colleges will learn from this, not that mentally ill people are dangerous, but that crime is dangerous.

Choice, the Right to Life, and the Texas Futile Care Law

In the Gimp Parade, Blue tells us about Little Emilio and the Texas Futile Care Law. Ah, the politics of life in a state that provides only the federally-mandated minimum of resources!

The Texas futile care provision makes for some ironic situations, that's for sure. Here we are, in a state in which a pregnant woman told her fetus has a lethal condition would face tremendous odds trying to secure an abortion, if she wanted one, and yet the state has no problem with sanctioning death for the sake of cost-control. And the Catholic-run hospital is fully on-board with the futile care law. There could be no better illustration that current abortion politics are not about the right to life, but about who gets to make the decisions regarding life. Apparently, the state of Texas and the Catholic Church think that decision should rest with (usually male) doctors and government officials. One might think that institutions that truly support the right to life would be generous in making provision for the necessities of life for those who can't get them without help. But if one lived in Texas, one would know what a silly notion that is!

The Gimp Parade: Euthanasia in Oregon

Via The Gimp Parade: Euthanasia in Oregon, a cautionary tale regarding euthanasia and the intentional failure to provide medical care for the disabled. As Blue points out, what happened to Tracey could happen to any of us should we lose the ability to speak.

So-So Security

Morgan Dawn tells us about an article attacking Social Security Disability claimants. The article is a blatant "lucky duck" argument striving to refocus outrage from the greedy to the needy. Author Melanie Scarborough displays an astounding viciousness regarding the social consequences of disability. She apparently thinks that people with mental illness or autism are just milking the system, to judge from her assessment:

The guidelines say “social functioning’ includes the ability to get along with others, such as family members, friends, neighbors, grocery clerks, landlords or bus drivers.

“You may demonstrate impaired social functioning by, for example, a history of altercations, evictions, firings, fear of strangers, avoidance of interpersonal relationships or social isolation.”

Why should anyone collect a check from taxpayers just for being a jerk?

In determining mental disabilities, examiners also consider the applicant’s “concentration, persistence or pace.” So work slowly and give up easily, and you might be rewarded with a monthly check.

Scarborough also shows that she has no idea whatsoever how disability for the sake of SSDI is determined. She complains that the list of conditions for which one may receive disability is so "exhaustive that almost everyone has some condition by which they could claim to be disabled." I'll be glad to introduce her to the widow of a man who died from complications of EDS. During the final years of his life, unable to work or even to sit up on his own, he was repeatedly denied benefits until his lawyer managed to bring him in, on a gurney, before the judge who finally realized he was looking at a dying man. The first check came after his death. If that list is so darn exhaustive, how does it miss chronic joint dislocation and organ failure as symptoms that indicate a person can not work for a living?

Insisting that few people have disabilities, she then cloaks her distrust of people with disabilities with a false concern for those with "genuine disabilities" such as MS and Down's Syndrome. Everyone else, she believes, are "chiselers." And a much worse problem than CEOs draining the life blood out of corporations despite their incompetence on the job. Lets see, the people I know getting SSDI get in the neighborhood of $700 a month. That means that, in 10 years time, they have received about $84,000. That's penny ante stuff for any real cheats. Just ask former Home Depot CEO Robert Nardelli.

"Quadrapoligic"

Over at Gimp Parade, Kay shared with us a comment from last spring from AJ. AJ is not only piously concerned that Kay is bumming down his/her religious high, but has also added to the English language.

"Quadrapoligic"

Quadra--meaning 4

Pologic--meaning "of a study," like in anthropologic or sociologic

Thus, "quadrapoligic" must mean the study of 4 or perhaps study through the application of 4, and is a specific branch of numerology.

Thanks, AJ! My Word Power hasn't been so increased since I last came across an ancient Reader's Digest.

Happy happy, joy joy

I lost a thumb splint. For two days, my poor left thumb went unsplinted, though I did wrap my hand in co-ban in a sad attempt to keep my thumb from hyperextending. Not only does wrapping one's hand in co-ban not keep a thumb with delusions of freedom from trying to make a break for it, but it is awfully inconvenient when taking care of any sanitary matters.

But today, huzzah, I found it, a bit mangled but straighten-outable. And thus my thumb is once again held captive to the rest of my hand.

So, that's today's good news. It doesn't quite counterbalance the news that my house needs leveling, but between the house needing leveling and me having lost the thumb splint, the loss of the splint was of far more immediate consequence.

In other news, I'll be at the TACIL/SILC conference Monday. I don't plan to go to the Tuesday tour of the Texas Capital, because 1. I've seen it and 2. the thought of any extra walking is enough to make me happy to be sitting.

Our continuing story...

EDS activists are successfully getting their stories told in local papers. Here's an article that even brings up the ABC debacle!

so cool

Over at www.colourswheelchair.com, they have a clip of Aaron Fotheringham doing "hard sitting." If you ever wondered what the X-Games would look like if they included a wheelchair event, take a look at the clip.

Elasti-boy?!

Circus Performer is Real Life Elasti-boy

Yep, that's the headline that has accompanied the ABC press release as it has appeared in newspapers across America. And ABC is shocked, shocked, I tell you, that we're pissed? The attitude that people with EDS are some sort of freaks interferes with proper diagnosis and early, useful, intervention. This is the sort of attitude that creates situations like I wrote about in FLK.

All in your head?

Erica has an interesting graphic from the EDNF.

Mobilizing against misrepresentation

The American Pain Foundation is spearheading a campaign to let ABC know that its representation of EDS on Medical Mysteries was irresponsible and injurious. APF has set up an action alert to send letters to ABC about their treatment of EDS as a freak show. It's easy and you will feel much better letting ABC know their treatment of disability issues leaves a lot to be desired.

While you're there, you might want to join APF. It's free! And they are an effective lobbying group. Free and effective! What could be better?

And, as someone else has suggested:

Remind everyone that this is a great opportunity for us to be contacting television, print, and radio media right now. Write those letters to the editors of your local paper! Let them know that the nature of the show is indicative of a desperate need for public education and awareness.

It is also the ideal time to be contacting your state and federal legislators (especially those on health and education committees) as they may have seen or heard about the segment. Let them know that this poor coverage is further evidence that additional research and education requirements are needed.

Research indicates that EDS affects one in 5,000 people. Current statistics indicate that there are just over 300,000,000 million people in the USA so, 60,000+ must have EDS. Assuming each of them has an average of 8 friends, family and caregivers, there are nearly 500,000 people who deal with EDS on a daily basis whether they realize it or not.

Keep in mind that we do have talking points that should be common in our correspondence. These talking points should be illustrated in our personal stories.

Tip #1: Keep the message simple, to the point and concise. It is a KISS=Keep It Simple & Short.

Tip#2: Know the talking points:

1. Ehlers-Danlos Syndrome is a genetic condition that can cause disfigurement, crippling disability and early death if not diagnosed early and its symptoms managed.

2. More research is needed to facilitate early diagnosis and to develop effective treatments that will prevent death, disability and disfigurement.

3. EDS research overlaps with other segments of the population; aging, arthritis, healing (diabetes), pain and cardiovascular health.

4. The diverse EDS community is full of compelling stories; athletes, dancers, musicians, children, doctors, nurses, singers, bankers, accountants, lawyers, parents, soldiers, pilots, grandparents, friends.....

5. Published research indicates that EDS affects one in 5,000 people. Current statistics indicate that there are just over 300,000,000 million people in the USA so, 60,000+ must have EDS.

6. It is estimated that only 10% of EDS affected individuals receive a diagnosis prior to an emergency situation that results in disfigurement, a crippling disability or premature death.

Spread the word. And write those letters! If you know of another disability that has been misrepresented in a particular episode of Medical Mysteries, why not mention that, too? Mobilize against the side show!

Medical Mysteries

The EDS lists are abuzz over ABC's Primetime show "Medical Mysteries." And not happy abuzz, either.

And ABC is sure hearing about it! Bunches of angry people, not at all pleased at the implication that they or their children are freaks, have descended on the Primetime message board.

If you really want to know what EDS is about, check out EDS Today or CEDA or EDNF.

Amongst EDSers, the number one rule is: No party tricks. So, no. Don't ask us. We aren't turning our feet backwards or yanking on our skin for your amusement.

Victim of inclement weather

At the beginning of this week, we had unusually icy weather. So unusual has been this weather event that just about everything was closed down from Sunday through Wednesday. This includes my employer.

I appreciated not having to drive on iced-over roads, but staying at home has its own particular dangers. Since my house is both uninsulated and unheated (it also has a tiny bathroom that seems once used to be the pantry, so we're talking Old House), most of the past few days have been spent in one room, with one space heater and my electric blanket. And of course, I spent lots and lots and lots of time with my laptop, surfing to every link of any interest whatsoever. Since I live alone, there was very little to distract me from this dangerous activity.

Thus my ice-related injury is that I have generated a cycle of subluxing in my wrist. And this is on my dominant hand, so avoiding stress on it is not likely.

But that wasn't the end of it. Friday, I was back to teaching. After my classes were over, I got in the car. I started it up. I backed out. I put my foot on the brake. And dislocated my knee.

On the bright side, it was still cold enough that ambient air temperature all on its own kept the tissues from swelling. And, the other bright side, that particular knee has dislocated so often that at this point it reduces itself as soon as I take pressure off it.

On the not bright side, it's my right knee that will now need to be gingered for the next month or so, and my left wrist that is in a sublux cycle. So I guess I'll be using my cane like Dr. House. I hope that doesn't put my right shoulder out of commission.