Wheelchair Innovation by Teens in Plainfield

Every once in a while, I get to write about something cool and fun and human. This is one of those times. 

According to the articles listed below, Stephen Scholl is a senior at a local Plainfield, Indiana high school. He participates in a recycling program that has been wildly successful at his school. In an article about his Life Skills class and classmates – a fellow student saw a picture of Stephen and a need he could fill. Tim Balz and companions got together to build Stephen a powered chair to replace his manual one. This would make many aspects of Stephen’s life easier, including collecting recycling.

This effort has grown well beyond both teens and their friends and family. I found this story through a link sent to me by D, here at the IndyStar.The comments are surprisingly civil for the Indy Star (as of my reading of them), but one should probably exercise caution anyway. Besides the local paper of record, this also received coverage from at least one local news station, WTHR.
This is also a good article, although the comments are a little more problematic as some of the commenters are unfamiliar with “people first language” and poorly defend the author’s use of the phrase “wheelchair bound.”

This has grown into Wheelchairs for Special Needs. If you go to the linked Facebook page you can get caught up on their current and past efforts, and find out where you can help. From the comments at the IndyStar article: “I received an e-mail back from Josh Duke, the author of this story. He said that if anyone is interested in donating to Freedom Chairs, they can contact Tim Balz directly at wheelchairsforspecialneeds@gmail.com “

From the Facebook page: “Great News! It turns out that we are [allowed] to accept donations. The only issue is that we cannot give tax deductions at this point in time. We will soon set up a method for you to be able to donate!”

Enjoy your day!

Ally Anxiety

So, Tuesday, I am did my usual thing… I listened to the Blacking It Up pod cast (and you should, too – it is amazing!). Apparently, bridges had been built over the weekend by Jack and Jill’s Cheryl Contee and Elon James White at RightOnline, because we had one of our first trolls. Ms. Contee’s and Mr. White’s adventure is documented here: “INCOGNEGRO:  UNDERCOVER AS A BLACK CONSERVATIVE AT RIGHT ONLINE DURING NETROOTS NATION PART 1." It is a must read! While I already read Jack and Jill Politics, I keep checking the site for the next part…

The pod cast was full of the anticipated and appreciated awesome. Then the troll showed up. What followed caused, for me, a severe case of ally anxiety.

During the pod cast, there is a chat window underneath where the listeners can chat amongst ourselves, respond to the show, ask questions, snark – whatever happens to be going on. Sometimes we wander way off topic, sometimes the show and the chat room work in beautiful harmony. When I started listening to @BlackingItUp and BCCO’s other shows, I just listened for a week or two, because I am a visitor, an ally – and I did not want to come on too strong, too fast, too pushy, too “white liberal on the internet.”

This day, a new person came into the chat. New people are fun and enthusiastically welcomed. This person was not fun. One by one, this person (I presumed he, there was the tell tale reek of mansplaining) started raising racial flags. Whites are racially oppressed, standardized testing is not racially biased, I am colorblind – why aren’t you, I should not get searched at the airport, racial minorities are racists because they complain about race relations, but everyone is racist like me. You know ‘em and hate ‘em: they are the classic tropes of the racist. He would raise one flag, wade into his rightly earned flak, wait for a few moments, and then raise another one. I would not be surprised to find that “oneshotoneki11” (my approximation) is at least a semi-pro troll.

Here is where the ally anxiety comes in: what do you do? I wanted to be out in front, and stomp this asshole into the ground; to stop the badness, to vent the frustration of not being able to confront so many people’s racism, and personally to show that I am not with him or his ilk. But I am working on being an ally; one of the first rules is DO NOT MAKE IT ABOUT YOU IF IT IS NOT ABOUT YOU. So I reeled myself in, spoke my peace once in a while but mostly either stayed out of the way while others let him have it, supported the excellent arguments being made against him and his toxic memetic stew, and expressed dismay that he would violate the hospitality offered him as a new guest.

I know that my case of ally anxiety was nothing, nothing compared to what the black listeners were going through while this was happening. I know that what was going on in my heart, my head, and my gut is miniscule in the grand scope of things. My feelings, my reactions – those are not a big deal to anyone but me. I write this to air it out, to solicit the opinions and experience of others, and to give anyone that wants it an insight into what went on in my head (or heads like mine?) during this. I was angry, I was sad, I was sick. We discovered that four (if I remember correctly) white members of the audience had stayed on this guy, which was also cool. I think that we, the audience, feel a little closer to one another, because of what this asshole brought out a united sense of solidarity in us.

Plucked popinjays like this troll make me ashamed of my skin. I wanted to apologize for his inanity, and I did – but that does not make any sense. No more sense than the bizarre “blaming” that minority groups sometimes face over one individual behaving badly. 

I found out that I was not obviously white, which is kind of neat.Often white racial justice allies are problematic in and of themselves. They refuse to recognize their own internal racism, how all the little assumptions, good, bad, and "neutral" add up to a racism that is insidious, because it can hide.

Racists often do not even know that they are racists, let alone doing evil. You cannot convince someone (though any means) to stop doing something they believe they are not doing in the first place. 

The top of the kyriarchy knows that their days are numbered and that their power is slipping – which, I think, is why they are always scrambling, always grabbing, and always further consolidating their power. With the election of a President that neither looks like them nor shares their history or values, they are now in a full on panic. “Take their country back,” indeed – just as the rest of us may start to think it may actually be our country, too.

Blog note: The various Pod Casts are archived and available on the Brooklyn Comedy Company’s web page. You can also find the shows on ITunes and YouTube – remember to take a moment to rate and comment, they deserve the love.

Shout out to the chat room – sorry about the trash.

SmartAss Commentary: Liberal Crip Goes to the Gun Show

The Indy 1500 has a terrible web page – there is very little you can do there but find out the dates of upcoming shows, sign up for a mailing list and $1 off $10 admission, and see some photos of previous shows. However, it is a decent show as far as I can tell. I had a decent time there. I want to talk about my own gun history, some of the social issues at the gun show, and the accessibility for people with disabilities.

I should probably spell a few things out here before we get started. I am a Second Amendment liberal. I believe in both state protection via police and sheriff departments and self defense. I find the arguments about the intent of the Second Amendment to be more semantic than practical. When the Bill of Rights was created, the gun was simply a tool of survival in early American culture, as in many others. Small, unfunded local defense militias depended on each member to have their own arms. They did, both for hunting and defense. So I find that if a person has a solid answer to the separation of militia and culture – that answer may well be their opinion on the matter rather than a historical fact.

I grew up around gun folks. My mom’s first husband (my adoptive dad or ADad*), her father and several of her brothers all served in the military. The first gun stories I heard were from ADad as he explained the AK scar he acquired in Vietnam. He was shot in the shoulder by a [enemy combatant – I will not use the word he used] and he returned fire, killing the man. My mother was very anti-gun. My grandfather and multiple uncles were enlisted military men. My husband was a military kid, and very comfortable with guns. My boyfriend grew up in a rural social network that was also very easy with firearms – his father was a police officer and is now a correctional officer.

I am intimidated by guns. I am also proficient in their use. I am not a pleasure shooter – you know, the folks that can relax by going to the range for an hour. I cannot get away from their purpose. When aiming at a target, all that is on my mind is why I would be doing this for real – to end the life of another living being. The moral weight and sadness of that is always on my mind if a gun is around. There is no pleasure for me in being able to put six forty-four caliber bullets in a three inch diameter circle.  I can, and do, shoot very well. I hope to never actually need to do so. I do have fun with AirSoft weapons, though – they shoot soft BB-type ammunition powered by gas or springs or batteries.

Now that you know some of my gun history, time for the gun show! (Do I kiss my wimpy biceps here? Probably not…)

Admission was $10, you received a $1 off coupon if you were on their mailing list. Security appeared heavy, but was actually very light. Police were all over the place, as security and patrons. Loaded weapons were not permitted, although we were simply asked if we had any. D had a pistol that needed the sights repaired, and he was directed by the ticket takers to a booth where his pistol was strategically fitted with plastic zip strips to prevent it from being useable. If a patron was found to be carrying a firearm without this treatment, the penalty was immediate ejection from the premises.

Recording devices were not allowed. Although that made writing this piece much more difficult, I followed the rule. Honestly, other than catching someone in the act and ejecting them, there seemed to be no other way of enforcing that rule in this day and age of cell phone cameras, PDAs, and micro cameras.

The building itself (a part of the Indiana State Fairgrounds) was perfectly accessible. Accessibility issues included florescent lights, no scent policy, lots of random noise (no, no gunfire, except on the soundtracks of some videos being shown), and no quiet areas. While some of the table-made aisles are more narrow than others they are still passable in my manual wheelchair… except when some jerk vendor decided they need to set out yet more product, and pushed out over the ends of their tables, or shoved their long gun cases 6-12 inches out into the walk way, or put up spinning displays that eat half of the available aisle space. Arg! 

TL;DR: the building and the planning covered some accessibility basics, but some of the vendors were terrible about it!

There were several areas where one could buy snacks and drinks. Two were permanent booths, and one was more of an open café - larger with displays and seating.

Not every person at the gun show is straight off of People of WalMart. Most folks are dressed in casual middle class or rural attire. The clear majority of attendants were white males. Attendants that appeared to be African American or women were not the majority, but were numerous enough to not be surprising - which may surprise some of you. Obviously disabled folks like me were numerous in chairs or scooters, and there were a comforting amount of cane-users.  A lot of families were in attendance. The vendors were overwhelmingly male, around middle-aged and white.

I have never been to a gun show that did not have some vendors peddling hate. I have spent entire gun shows feeling like I would get shot if I talked about my politics. I was really surprised at the small amount of hate on sale at this gun show. While one pro Nazi booth is too many, there was only one at the show. I saw maybe three booths with small collections of Nazi memorabilia. I sat and stared at the Nazi booth for a while, dumbfounded. This booth was shoved into a corner where it was easily avoided, we almost missed it. They had mouse pads, t-shirts, bumper stickers, jewelry and accessories.

There was a lot less First Nations appropriation than I expected from my previous experience. The generalized, white washed “Native American Aesthetic” is very popular among the survivalist, hunter, preparedness, and gun cultures. There was one booth that was using a dream catcher motif to raise money for disabled children to enjoy outdoor sports and experiences, I think.

Of course, there was a Tea Party presence, but far less than I had feared. One vendor had walls of vitriolic bumper stickers accusing President Obama of just about every thing you can imagine. Someone had passed around flyers I saw at several booths with showed a picture of the President and the First Lady saying “I’m with stupid.” There was one booth selling anti-UN pins, copies of the national and state constitutions with wild interpretations of them. I have copies of them, and may write about those booklets specifically at some point.

 

You have not really thought this stance through, have you?

(Picture description:  a small, round lapel pin or button showing the blue UN emblem, surrounded with a red circle and divided by a red line from upper right to lower left. The intended message is clearly "NO UN.")

As a liberal, all the hate, appropriation and ignorance made me feel threatened, angry, sad, and deeply uncomfortable. Parts of it were like walking back into the Bush administration, were disagreement was equated with treason and only violent, blind patriotism was an acceptable response to any slight at all. But it was much, much better than my previous experiences at gun shows. I do not think that some improvement is enough, to be sure. It does make me happy to see improvement though, and I want to encourage that improvement.

I did not patronize the hate-booths, and still felt fairly free to shop. I picked some targets for AirSoft practice, some great medical stuff (a brass mortar and pestle, glass bottles and tubes, and first aid supplies), two really well priced pieces of luggage, and some camping supplies. I did pick up some of the materials, including the more fantastic stuff to share with you. This included a flyer for an organization that is fighting for you to keep your right to .50 cartridges, an application for the Sons of Confederate Veterans (yes that is exactly what you think it is), the Indiana Citizens Volunteer Militia, advertisements for NRA courses and retreats, flyers for militaria shows, Indiana Gun Owners pamphlets, and material on the Oath Keepers…

*I have a total of three dads: my biological father, or BDad; my mother’s first husband who adopted me when I was five, ADad, and my mother’s second husband (now divorced), ExSDad (ex-step-dad). Also, my mother’s first husband remarried, so I also have a step-mom out there, SMom. Of the five, ExSDad and I have the best relationship, and he is the one I would call in an emergency.

To Violently Induce Empathy

I originally wrote this in May, 2010, when I felt particularly injured by people in my life that just were not getting it. I think that acknowledging when I feel like a bitter, embattled bad crip is important. While I was busy drawing analogies, I lost site of how violent this post really is, so you have been warned.

Originally posted elsewhere on May 7, 2010

I needed to get this out of my head.

Some days I am almost fine. I get up early, I get stuff done, maybe I go out, and maybe I fuck. These days are rare.

Some days I am incapable of almost anything. I stay in bed, or turn the couch into my bed, and veg out to news so I do not feel totally disconnected from everything. I do not fuck with anything on these days, nor do I appreciate getting fucked with by anyone. I can barely move, I can barely read, I have almost no recall and can barely follow a conversation. If I am actually trying to do something while like this, then I place a great amount of importance on whatever that may be, and even then I will probably screw it up.

Most days I am somewhere in-between and either blow all my spoons far too early, or end up doing very little "in case" I need my spoons later that day.

Only if I place a great deal of trust in you will I tell you what kind of day today is when you ask "How are you?” I am so tired of being shut down by people that ask how I am but do not really give a damn.

I "pass" most of the time. People do not know I am disabled unless I tell them. Yes, even with the cane -- this is weird to me. So when I go out with the wheelchair it is almost always a gimp circus. People think that since I do not look disabled (whatever the hell that is supposed to mean!), that I must be faking or something. Fates forbid I actually stand up out of my chair for any reason.

I am tired of being a "good cripple."

Don't touch my wheelchair without gaining my permission first. Do not imply it must be nice to "sit around" everywhere. Yes, I can make those jokes, and you can laugh when I do if you want to laugh. Do not explain to me how good I have it, or how bad you feel for me. Just like I do not get to appropriate the experiences of a person with Autism, you do not get to appropriate mine with lupus/SLE and chronic pain (and SI joint dysfunction, and compressed disks, and non-specific brain damage, and...). Do not lecture me about my behavior, my drugs, or my coping mechanisms. Do not excuse places that are not accessible to me, or accessible to the people that society has labeled the same as me.

Do not "congratulate" me when I am not in the chair. I know you mean well, but just stop it. I may be having a good day, or I may be someplace that simply would not accommodate what I actually need that day.

Do not tell me you know "how I feel" unless you really want to. While there would be no complete equivalent, I could give it my best effort...

I cannot fuck with your genes to make your body attack itself, but I can take a baseball bat to your chest, your lower spine, your SI joint. If it is a rainy day or the weather fronts are changing, I will just wail on every joint you have from your knuckles to your toes to your spine. I will wrap your head in batting so tight that the very thought of light in your eyes will make you cry. I will stuff your ears so that you can barely hear, and cannot make sense of the things you do hear -- only later to remove it all and subject you to such noise that you long for the stuffing. I will knock your legs out from under you when you try to walk, move everything so that it is just out of reach, and recite long numbers as you try to remember your address or someone's birthday or phone number.

I will alienate your friends and family, canceling important events without notice or apparent cause. If they will not come see you, then fuck them because that is the only way you will socialize most of the time. I will make you doubt yourself, the people around you, your ability to do or think a damn thing, and then make you feel bad for being angry about your situation. I may let you go out every once in a while, but I will fill that time with so much fear, doubt, and shame that you will wish you stayed home. Your doctors will become your only major contacts outside of your home, and even then I will not always let you go -- and only the really good ones will even listen to you, let alone believe you.

Whatever heaven you believe in help you if you dare shut me down and try to pretend everything is okay. I do not get to do that, so neither do you.

Most folks that will actually read this never have to worry about any of it. You are kind folks that express sympathy without pity, and accommodate without fanfare -- and as you can probably see, that means a lot to me. This just would not leave my head and I needed to rant.

On Social Justice Blogging - Jumping in the Pool Head First - Advice

I have thought long and hard about trying to become part of the social justice blogging community. As a reader/lurker over the past handful of years or so, I have watched the public side of some very ugly shit (ableism, racism, fat hatred, identity policing…) going down on various sites. I assume that what went on behind the scenes was much, much worse. I also figure that any community is made up of people, and sometimes people are like that. 

Yet, I still have things to say and a desire to say them – even if they are only ever seen by some family and friends. And you!

I think that it is inadvisable to trust someone just because they share a common interest, even when that interest is supposed to be the “tide that lifts all boats.” So I will make what connections I can based on personal observation rather than assuming that someone with an SJ cause is going to know, understand, or care about what I hold dear. I expect to be treated the same.

I know that I will be distrusted by a lot of folks because I am white, and I get that as much as I can. I am also bisexual, disabled (although I pass occasionally), born and raised lower class (not so much now, but that stays with you in ways that are surprising and disturbing), pervy, nontheistic, and poly. This is not an Oppression Olympics entry; I just want to lay it out there here and now. Where I am privileged I will endeavor to be the best ally I can be and promise to improve at each opportunity.

At home, I have a saying, "The reason we do not argue when I am wrong is because I think before I flap my jaw and when I am wrong I apologize and shut the hell up!"

What is your advice for speaking your piece with strength, compassion, and integrity while weathering whatever storm may blow?

I may be late getting to comments today. I have a physical issue that is kicking my metaphorical ass and I am going to go look at a car today. Cross your tentacles if you care to do so - I could really use a car! This is the reason for the super early post and my anticipated absence.

Here is a sneak peak at what I have cooking for you, Dear Reader: a vitriolic crip rant I wrote one lonely night, a review of a product called Pill Glide, some thoughts on blogging while avoidant, some more Things That Make My Life Easier (with something catchier to call it, perhaps!), my experiences with Moore and Me, some neato links, and a small series of articles detailing my politics and why I think they are the correct choices for me.

Stating the Obvious on Medical Costs

In editing this piece, I realize that it is fairly hot and heavy handed. I simply cannot apologize for my vehemence, but now you know that it is there.

Many don’t take prescriptions because of the cost

I saw this on abbyjean's Tumblr.

Wow, LA Times, really?!? Gee, next they will find out that people break compliance with follow up or specialist visits due to money or circumstance. Holy fuck, do folks really have their heads buried quite that deeply up their own asses?

Yes, people want to follow up with their doctor’s orders, recommendations, prescriptions, suggestions, and referrals. This is why low income folks have such terrible compliance levels. Fucking hell. I can think of three big roadblocks right off the top of my head: no money, no time off from work or childcare, and no ride. We can dig deeper: some people are neglected and abused, at home and maybe at previous providers. Have you shamed a patient away because they were fat, slutty, or sloppy*? Did you do it with some snide comment in the hallway you thought they couldn’t hear?

We want to get better, just like everyone else does, dammit! There’s just a lot in the way that you cannot see, because you see a diagnosis waiting to be made, not a whole person. Can you just take one damn minute before you put your hand on the blasted door knob, and deliberately employ a gestalt point of view for just sixty bloody seconds? Are they seeing you on Medicare, Medicaid, or their own dimes? If the patient has transportation programs, sliding scales, pharmacy discounts, and/or drug manufacturer discounts available to them do they even know? Because it is just as bad as having no options if you do not know they exist.

Sure, maybe you and your staff just cannot handle trying to keep track of that on top of every thing else you have to manage. I get that, I really do. So help the economy by hiring someone to do it for you – all they would need is a high school degree, some empathy, and some tenacity. With the additional people you can help, maybe it will even cover an additional employee.

* Fat, slutty, or sloppy were just a few adjectives I have heard office or hospital staff use regarding patients. I offer no judgments to folks that are fat, appear to numerous sexual partners (people suck), or folks who have a hard time bringing themselves around to what their community considers acceptable appearance standards. Neither should their damn medical professionals!

On Trigger Warnings

Trigger warning: the explicit statement that a piece is about to discuss topics that some may find difficult or disturbing. For example, a blog post about Roman Polanski’s crimes may read “Trigger Warning: Underage Rape.” Their use (or lack thereof) on the web is sometimes highly debated. A great definition of trigger warnings and an advocacy of their use is here. You should be reading Shakesville, if you are not already.

On one hand, I think trigger warnings are great. It is a good way to avoid inadvertently sending someone shivering into a corner because you have mentioned something that they actually experienced and still haunts them (or any version of that scenario). This should be a default part of trying to be a decent human being, no? I do not want to be the asshole that does that to someone, do you? A lot of sites I read and respect use them, and a lot of readers appreciate them.

On the other hand, the little writing snob that I apparently have in my head says, “Well, if you write like you are supposed to, with a summary at the top and all, then that is the trigger warning!” This, of course, makes me feel like a crappy writer if I use them. Yes, even when you take into consideration that blog posts are far more conversational than formal. Please do not mistake me; I am not in a position to deride anyone’s writing style. That voice derides my writing constantly, as you can probably tell. Most sites that use trigger warnings, given the beginning of this paragraph, do not need the addition of the words “trigger warning” as they let you know what they are talking about right away, anyhow.

This also makes us de facto gatekeepers of each others’ mental health, in an amorphous way. We are our sisters & brothers keepers to an extent. But how are we to know what is a trigger for each reader? Hell, do you know all of your own? Are you sure? This article talks about it very intelligently, and I highly respect the folks that write at flip flopping joy.

If you were abused and that abuse was facilitated by putting a blue pillowcase over your head, am I a monster when I offer my hospitality and the guest sheets are blue? No. I am a monster if when you stand at the door shivering I do not offer my arm, lead you away, and change the damn sheets. But I cannot do that unless I know to do so, and I cannot pretend to know what may set you, the reader, into that particular hell called being triggered.

So, in essence, I will be giving trigger warnings (because it is the correct thing to do), but usually not using that exact label (because of the snob in my head). I do promise to do my best (which varies on any given day more than it does for most folks - thanks, lupus/SLE) each day to write well, and let you know up at the top if there is problematic content. You are welcome to call me out, if you wish, when I fail. This should both meet the needs of people that need to concern themselves with being triggered, and placate the snob in my head.

Safe Space

I have read a lot on the web over the past mumble years. (No kidding, since before it was all connected, e-mail address could be lines long and have things like BANG in them, and pretty much consisted of us writing on clay tablets, smashing them into a fine powder, and sifting them into phone lines for transmit. Maybe I am teasing about the tablet thing.) In the past couple of years, I have gotten involved in educating myself on a subject I had always held dear, but mostly felt I would be alone in: social justice.

One of the things I have learned is the importance of a safe space policy. This allows the disenfranchised to give air to their voice without reprisal from the usual subjects. You will not be told your tone about feminism is too strident here. You will not be told to apologize to the jack hole that stepped on your toes here.

When I first told my friends about Patient C, one very smart one asked me about my commenting policy and why I had it. I responded that the conversations are better on the sites I read that have such a policy. I have seen the tales of threats of rape, death threats, and various evils out there, and I will not allow them here.

Now, on the other hand, some folks view the entire web as their very own First Amendment playground and like no fetters placed upon it. If this is you, you will not be happy here. So take my fond farewells with no bitterness, and may you find what you seek elsewhere. Right up at the top of this page, on the toolbar, you can start your own blog for free and set whatever commenting policy you like. You do not have to put up with mine.

This? This is my little corner of the Internet, and inside the bounds set by my host, what I say, goes. If you post bullshit, I may not publish it at all. I may publish it to correct, ridicule, or maybe even correct and belittle you depending on my mood.

I intend to amplify certain voices over others. I intend to speak to my own experiences, point you towards the experiences of others that may be edifying, and share information in a way that, if not equal, then lifts up the voices that are rarely heard.

On this, and a many other things, am sure I have screwed up regarding the privilege I do have. This will undoubtedly continue, as I try my best to my efforts as mistake-free as possible. It is okay to point it out when I do. I cannot learn and grow if I do not know when I fuck up. I do not expect those with disadvantages different than my own to instruct me, but I would appreciate the occasional helping hand. So if you have the spoons and the inclination, I will do all I can to accept that criticism with grace, learning, and as much of a lack of ego as I can muster.

(Edited - that last paragraph had a ton of grammatical errors!)

SmartAss Commentary: Niaspan Commercials

Niaspan

Oh, how I loathe these commercials for Niaspan. Have you seen these? Wow, these pieces of passive-aggressive, sly, guilt-ridden pabulum are just stunning.

Here is the “brother” version. There is at least one more, but I cannot find a link for it. It is not quite as bad, but still not good. Scratch that, there are three total, and they can be found on the Niaspan homepage here.

I find these commercials to be full of coddling, wheedling, coercive, bullshit. It is hard enough to manage a chronic illness/injury/disability – we really do not need to be badgered by our friends and family. I think the idea that these are “interventions” kind of trivializes the actual purpose of an intervention, you know – giving a loved one a chance to stop and think about what they are doing to themselves and the people around them. To let them know that they are loved and supported, and that this will still be true if they try to change their lives for the better. It is usually reserved for exceptionally destructive behavior.

Take the brother commercial – the speaking brother is chastising the audience brother about the fact that he is not taking Niaspan. Never mind the facts that the brother has made the diet and lifestyle changes that are necessary for his condition. Oh, no – he isn’t doing enough because he isn’t taking this pill! What if he is already taking niacin? Or what if he has a contra-indication, like liver trouble? The speaking brother apparently does not care. He has decided what is best, and damn anything else.

The daughter commercial does not specify what other changes the audience dad has made. But she is going out on an awfully long limb for something that “might” work.

The sister commercial is mind boggling. “I know one more pill… I get it, I do,” No she does not, or she would not follow that with, “I am not taking ‘no’ for an answer.” The gall on display is stunning. Of course she knows best, how it could be any other way is beyond her grasp.

These commercials are demeaning to health care customers. They play into the all-to-common assumption that we, as individual patients, are either too stupid or too lazy to consult with our doctors, do our own research, and make our own decisions.

If you do have a friend or loved on that is dealing with cholesterol issues, it is totally okay to offer your support. As with other health issues, save your advice for when you are asked for it. No, we do not want unsolicited advice – by definition. If we wanted it, we would seek it out and ask you.

While looking for links to the commercials themselves, I found some folks that despise this almost as much as I do at CommercialsIHate.

Niaspan on Wikipedia is here. (This entry is actually about Niacin. Niaspan is apparently prescription strength, time release Niacin.)

SmartAss Protips: Bedrest

I wrote this on a disability discussion board, and thought it would be good to post on PatientC!

I wracked my brain to think of the things I do when I am stuck in bed, and here are a few things I remember. This tips may help you in a temporary bed rest situation, and if you think they will, feel free to use them. If you have tips of your own, please share them in the comments!

Planning - this helps me a lot, as it reminds me that bed rest will not last forever. I take my upcoming projects, write them out and plot each step. If the malady itself will screw with the project (say the project is knitting and my hands are messed up), then I include what recovery milestone I need to reach in order to complete each particular step. If I can, I may go ahead to work on the project up to the point where I cannot anymore, in anticipation of getting out of bed again.

Communicating - I try to get things out of my system. I talk with family, e-mail friends. Feel around, see who is able to get it enough to share with them and then do so. I say that with this caveat: people will surprise you. Some folks you thought would be there will flee and some that you maybe thought couldn't be bothered will come through in amazing ways. Writing works for me when I do not feel like another person is available, or I am trying to sort something out for myself first, or I am having a fit of pique.
 
Change things up - tell folks when you are up for company, if fresh faces help you at all. If I am up to making bathroom trips, I use that to my advantage and change the scenery. Sometimes I will make the morning trip and then retire on the couch. That night, when I make my last trip, I will end it in the bedroom.

Brain play - Got a book you always wanted to have time to read? Heard of a subject you always meant to research when you had the opportunity? Is there a neat but maybe useless-in-daily-life skill you wish you could develop? Video games are one of my favorites here (I less-than-three PopCap games!) and they usually take minimum to moderate mental acuity. I bought my first Xbox right before I had my tonsils removed. It was one of my best calls ever! Volunteering for phone work is a great idea! If you are a mind for it, this is a great time to work on skills like meditation, creative visualization, focus and concentration...

Ask for help - when people say "If you need anything..." let them know that you do. Even if you are not comfortable asking for something big, like babysitting, maybe you can ask for them to bring over a movie your kids have not seen, pop some microwave popcorn and turn watching TV with the kids for 90 minutes into an event! 

All my best for your speedy recovery. This sort of thing can be so much more taxing than a lot of lucky people will ever know.

Wow, Folks!

Well, people, I want to thank you for getting the word out on my wheelchair etiquette piece. The response was amazing! (Also, a little scary, but I am avoidant, and we can talk about that some other time.) I am very gratified by the traffic, and by your comments, I do not know what to do or say other than to thank you.

So, thank you.

I have been alternately busy, sick, or both busy and sick lately. Okay, and a little bit of Halo: Reach in there too. Blame SLE/lupus, the Democratic party, my birthday (woot!), maybe Bungie, and definitely me. I have a bunch of stuff in the works for Patient C, but I have some juggling of priorities to do, too. Yes, a round of sighs all around. 

I promise I have some good stuff going, but some of it it is also tough -- recounting atrocious stories in order to get to the meat of various matters takes more courage than I can sometimes muster all at once.

Awkward Moment, 2

The other day I was in the hospital with some friends I was supporting, and since the day was long (what day in a hospital isn’t?), I spent it in my wheelchair.

I was at the corner of my friend’s bed, and pretty out of the way. A nurse came in to prep for a new patient in the room’s other bed, which is fine. She decided I was in her way, looks down at me, and says “I’m going to have to move you.” A nurse! I responded, “No, you are going to ask me to move and I will move.”

My friend saw it, even with all she was going through, and mentions it in the comments here.

Alright, I am occasionally known amongst my friends as having high expectations for other people… But I will be damned before I find it unreasonable to expect a medical professional in a hospital to know some damn wheelchair etiquette!

Would you tell an able-bodied person that you needed to move them? No. If you would not say it to a temporarily able-bodied person, then do not say it to a person in a wheelchair!

Edit: for grammar.

The SmartAss Guide to Wheelchair Etiquette

(Updated!)

Alright, this is going to consist of one solid concept and then variations on what to do with that concept. With the amount of faux paux, ignorance, and just straight up bad behavior I have seen myself, I feel like this is necessary. I do not believe that I should have to add a sarcasm warning to something with the words "smart ass" in the title, but there you go.

If you find yourself sputtering “But, but…” or getting angry or defensive – well, you will have to deal with that. There are guides out there that are more politic, nice, and cater to the discomfort that the able-bodied or temporarily able-bodied feel in these situations. I do not give a damn about that. You have been warned!

Main concept: a person in a wheelchair is just that – a person in a chair. Person. Chair. That is it. The corollary to that is this: do not do ridiculous shit. If you remember nothing else, remember this, and it should guide you well.

Editorial note: I often just say "wheelchair" as that is the scope of my experience. As far as I know, all this also applies to the users of scooters and power chairs. If I am mistaken, please let me know in the comments and I will happily make appropriate changes.

Now let’s talk about how that plays out in real life.

A Few Days Away, Suggestions

Hello, thanks for stopping by!

I wanted to let you know that I am going out of town for a few days, to visit a friend that is out-of-state, in the hospital and is going to have surgery. She is a great gal, a terrific friend, and I have high hopes for this procedure. I will leave tomorrow, be back this weekend, and should have a new post up before the weekend is over.

I have a few posts half written, but I do not think I will get to them until I get back. My next piece may very well be on ER/hospital etiquette.

I have not taken a solo road trip since I have been sick, so this will be an adventure on a number of levels. I may write that up, as there are singular concerns for the disabled/chronically ill while traveling. 


So while I am gone, I ask you to take a moment, think about what you would like to see me address here, and post a comment about it!

Helping Kids Understand Differences

Kids learn by example to meet the unexpected

(via a great blog: FWD/Forward (feminists with disabilities), a really great resource for information and fellowship)

I really liked this article, I think it gave some great advice and I would like to add some of my thoughts to it.

• Remember that the disabled person you or your child is curious about is out doing their thing: shopping, working, whatever. Keeping that in mind, I believe it is okay to say something like, "Hi! My child is curious about your cane/wheelchair/helper animal, and I don't know much about it, myself. Would you mind chatting with us about it for a moment?"

• No one is obligated to educate you,  we are not required to act as representatives of X population on demand, so be graceful if your request is denied. We are not your "teachable moment."

• It is also okay to say "I do not know a lot about that, so we can look it up together when we get home."

• Teach your kids that helper animals are not pets, and should not be treated as such. 

• Talk directly to the person, not their aid, unless they or the aid indicates otherwise. Sometimes folks will talk to the person pushing my chair about me rather than to me, and that is indescribably rude.

• Do not use disabled people as an object lesson. Seriously. In a store, I heard an adult tell a child, "You will be in a wheelchair, too,  if you do not learn to look before crossing the street!" Do I need to say that this displays an incredible lack of decorum or social awareness?

Do you have anything else you would like to add, or ask? Feel free to do so in the comments.

I am working on a couple of other posts, and hope to have more up soon. Thanks for stopping by!