Saturday, December 31, 2011

Eric LeGrand Honored on SI Cover

Since last fall many of us in the spinal cord injury community have been following the recovery of Eric LeGrand, he being the subject of an ongoing highly publicized SCI story. Especially as it touches the sports world. As I briefly wrote in this post last year LeGrand is a former Rutgers defensive tackle who sustained a SCI making a special teams tackle and is now a quad. Since sustaining his SCI he continues to work hard in rehab, has gone back to school, does Rutgers football analyst work, and remains steadfastly confident that he will walk again someday. A few weeks ago it was reported the he can now sit up on his own for brief moments at a time.

In a touching moment before the Rutgers-West Virginia game on October 29th, LeGrand lead the team out of the tunnel and onto the field in the snow in what was his first time back on the field since sustaining his SCI. Last week a cool picture taken that day made the cover of Sports Illustrated’s pictures of the year issue. In fact, LeGrand leading the team onto the field was the primary subject of the issue’s cover story, which was voted as the fan’s choice for the best moment of 2011. It was one of those rare instances where sports and SCI converge. Good for him.

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Monday, December 26, 2011

New EasyStand Blog Guest Post: Explaining Spinal Cord Injury to Kids

My new monthly guest post for the EasyStand Blog is now available. After my niece asked “the question”  I discuss the challenge of explaining spinal cord injuries to kids. So check out: Explaining Spinal Cord Injury to Kids.

Tuesday, December 13, 2011

The Ignorant Side of Macy’s Holiday Holidazzle

Almost two years ago now I wrote this post in this blog’s Annoying/Aggravating/Interesting Access Picture of the Week series featuring the picture below of an elevator button at the downtown Minneapolis Macy’s store labeled “For Handicap Use Only Middle Car Call.” At the time I posted the picture to make two observations: 1) to point out that the use of the word “handicap” was somewhere between poor word choice and offensive to people with disabilities (using handicapped, disability, or accessible would be much more PC) and 2) to question the chances of able-bodied folks actually deferring priority use of the elevator to people with disabilities as is intended.

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My initial inclination to the latter was that no they wouldn’t because I’ve seen too many instances over the years where in busy stores like Macy’s every man for himself mentalities often butt ahead of proper etiquette. Even when it comes to matters of disability access and accessibility. And especially during the hustle and bustle of the holiday season. Being a wheelchair user I am of the opinion that I should get priority to any parking spot or ramp or elevator that I need to use over anybody that can walk, every single time, in any circumstance. Period. But unfortunately that is not the case fairly often.

But interestingly enough I got a first-hand answer to the notion above with this specific  elevator two days ago when I went to the downtown Minneapolis Macy’s 8th Floor Holiday Display with my parents and my girlfriend. As we approached the bank of elevators I could see that there was already a buildup of people waiting for the next elevator to open up. It was mostly couples, families, and people with child strollers. The people with strollers had a much more genuine reason to use the elevators but the rest could have easily used the escalators that were nearby instead. Having used this bank of elevators about a dozen times over the past few years to use the Macy’s skyway to go to legal conferences in the adjacent City Center I positioned myself right by the elevator in the picture above. But as each elevator door opened nobody got off, nobody made room, nobody paid attention to the disability label on that cart. In fact, people were so impatient to get upstairs to the 8th floor display that they started getting on the elevators to go down one floor just so that they could already be on it when it went up again.

But the most ignorant and interesting part of the story occurred as we were on our way out. After we went through the 8th floor display we went down to the lower level to the cafĂ© to maybe hunt up a snack. As we were going through the same busy elevator ordeal as before on our way back up to the first floor I again positioned myself near the disability specific elevator cart. To my right was an impatient woman with a baby stroller who was standing right by the sign above and would push the button every time a full cart came down and went back up again. The first elevator cart with enough room for me, my wheelchair, my parents, and girlfriend to fit in we jumped on. As the door closed my girlfriend said that she felt like punching a woman. I asked why and her reason was that apparently the woman by the elevator button said in a real snotty tone something like, “Try waiting in line next time” to us as we got on the elevator.

So to be clear, the very able-bodied woman who was standing right by the sign that designated the elevator for disability use only, who was in fact pushing the button on that sign herself, and watched a person in a wheelchair get on the elevator ahead of her had the audacity to gripe about us allegedly cutting in line for the elevator. That is holiday holidazzle ignorance at it’s finest, folks. Had I heard her say that I would have backed right out again, whether I got separated from my family and girlfriend or not, and chewed that lady out to set her straight. You know, in the true holiday spirit of accessibility advocacy.

Wednesday, November 30, 2011

New EasyStand Blog Guest Post: Fitting Personal Cares in Around the Holidays

My new monthly guest post for the EasyStand Blog covers the challenge of coordinating my personal care schedule around the holidays. It’s one of those hidden things that I, along with many other people with disabilities have to coordinate. Please give it a read: Fitting Personal Cares in Around the Holidays.

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Monday, October 31, 2011

New EasyStand Blog Guest Post: Confessions Of A Halloween Baby

My new monthly guest post for the EasyStand Blog is up now. Today is my birthday and I wrote about my conflicted relationship with Halloween and my challenges coming up with decent costumes post-SCI over the years. So please check out Confessions Of A Halloween Baby.

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Friday, October 21, 2011

World Osteoporosis Day

I thought that I would pay some quick recognition to the fact that yesterday, October 20, World Osteoporosis Day was annually observed all over the world. As I wrote in a four part blog posts which you can read here, here, here, here, and a follow up here, to my great surprise  I was diagnosed with severe osteoporosis in both of my hips and lower spine two summers ago. The primary reason for that was because I had spent 13 years mostly sitting in a wheelchair all day, thanks to my SCI. The fact that osteoporosis is called the “silent disease” is apropos because as I got into in great detail in my four part post on the subject, unbeknownst to me my hips and lower spine were silently losing bone mineral density as the years went by. At no point did any doctor explain what might be occurring to my bones, or enlighten me that it was a common, hidden issue with SCI, or recommend that I get a regular BMD scan to keep things in check. That was very frustrating. At least we caught it and I’ve been on medication designed to stop the BMD loss and hopefully build it back up. But it will no doubt be a long battle back to BMD levels that reflect my age group, if I ever get there again.

Here is a webpage that provides a decent quick tutorial on osteoporosis and World Osteoporosis Day, and this webpage includes an osteoporosis slideshow video that is worth the watch.

Monday, September 26, 2011

New EasyStand Blog Guest Post: An Inaccessible Taxi-ing Situation

My new monthly guest post for the EasyStand Blog is finished and posted live on the site today. I offer my take on the story about the ongoing inaccessible taxi situation in New York City. Please give it a read: An Inaccessible Taxi-ing Situation.

Wednesday, September 14, 2011

One Man's Annoying / Aggravating / Interesting Access Picture of the Week

This is a pic of a wheelchair accessible porta potty that I used at Lakefront Days in Prior Lake, MN last month. Last year on this blog I offered up a pic of an extra big accessible porta potty outside of downtown Minneapolis’ Kieran’s Irish Pub where they were gearing up for St. Patrick’s Day. Up until then I had my doubts about how accessible said accessible porta potties actually were, but I never had a reason to use one and only saw them from a distance. Since nobody was around when I went past Kieran’s that day I decided to peek inside and even roll inside a little but had no reason to use it. But when I was at Lakefront Days it was a really hot day and I had a lot of water and beer to drink and nature called immediately. When I struck off to find a bathroom I had no idea what I would find and when I found an accessible porta potty I was relieved. So I gave it a shot and I can happily report that it worked out well. There was plenty of room inside to fully turn around so I could both lock the door and get close enough to use the toilet. Of course, it was probably the most careful and controlled leak I’ve ever taken because the difference between using that toilet and one almost anywhere else is that anything that falls in is an instant donation to the local sewage treatment plant. But the next time I see one I won’t hesitate to use it. And thus another door of accessibility opened up in my world, which is huge in a way because when you gotta go, you gotta go.

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Wednesday, August 24, 2011

Wednesday, August 10, 2011

Belated Thanks to Kevin Sullivan, and R.I.P.

When I started law school in 2003 I moved away from home for the first time, going from Eau Claire, WI, a city of about 68,000, to Minneapolis, MN, one of the largest urban metropolises in the country. It also meant that I moved out of my parent’s house—a very safe, comfortable, accessible, and above all, insulated environment—for the very first time as well. That said, when I moved to Minneapolis I faced three major hurdles to striking out on my own: 1) finding fully accessible housing (with indoor parking) that would allow me to live my lifestyle safely and comfortably, 2) figuring out who would help me out with my personal cares in the morning, and be readily available if I needed extra help at any point during the rest of the day as well, and 3) how I would get gas for my van since I couldn’t fill my tank on my own and my parents, sister, friends, etc. who helped me around Eau Claire were 90 minutes away.

On Thursday August 21, 2003—the very same day that I started law school classes (a nasty bout of cellulitis and a blood clot on my lower right leg had me hospitalized for five days and delayed my move to Minneapolis by three days) I moved into the rehab residence at the Courage Center in Golden Valley, MN on a temporary basis while waiting hurry-up-and-wait style for my name to work it’s way up to the top of the waiting lists of about a dozen buildings that had wheelchair  accessible apartments. Unfortunately, they were in high demand with slow turnover. At the time having to live at Courage felt like a step backwards because I went from a mostly private apartment-like setting to a quasi-hospital rehab setting that I graduated from seven years prior. But it was a good transitional environment with nursing and attendant care staff on hand 24 hours a day. Within a week of moving in I drove around the area surrounding Courage on a night off from classes to familiarize myself with my new neighborhood and discovered a mom and pop style full service gas station called the Robbinsdale Oil Company, so that was a huge relief. I still use it as my primary gas station too.

Early that November my name finally got to the top of the waiting list at an apartment building with a new unit opening and I got a move in date of November 14. While I was just starting to try to figure out the personal care attendant (PCA) hurdle, which had to be set up by the time I moved in of course, my good friend Kurt, who was the Courage Center residence intake coordinator at the time, suggested that I go with In Home Personal Care. He told me that it was a high quality PCA company that was founded  by a quadriplegic named Kevin Sullivan. As soon as he said the word “quadriplegic” I didn’t need to hear any more: In Home it was. I figured that any PCA company founded by a fellow quad a) had instant credibility and b) would be specifically tailored to suit all of my personal care needs, because with us having similar disabilities it was practically guaranteed that any personal cares/daily tasks that he needed help with I did too. In fact, when you get put on hold when you call the company part of the message loop featured his voice in very Hair Club For Men ad-like fashion essentially saying “…and I’m also a client…” Within days I had made contact and was promptly brought into the fold. And I’ve been a client of the company ever since.

That is why I was saddened to hear of the passing of Kevin in June.* I still don’t know any details about the cause of his death other than the fact that he was found dead in his van in the parking lot of a grocery store. That notion alone made me cringe because the being stuck in my van alone when I really need help in an emergency scenario has run through my mind dozens of times in my fifteen years of being a quad. It’s in those moments that not having full finger function to call 911 really fast, having your wheelchair stuck in the vehicle’s safety lockdown, or to not be able to get the van’s ramp down quickly enough really seem to enhance the difficulties of living with such a disability.

Unfortunately, I never got a chance to meet Kevin either. The closest that I ever got was that I almost talked to him once. I was having nagging difficulties with a few personal care issues and asked for his number from someone in the office so that I could seek advice from someone who had more quad life experience than I did. It never got beyond an exchange of voicemails though. But he seemed like a good guy. I know that he was generous with his clients, giving us Christmas gift packages almost every year, a signed card with a $10 Target gift card inside for birthdays, threw client appreciation summer picnic parties, and got tickets for accessible seats at Minnesota Twins games that clients could use free of charge.

But the company that he founded is great and it has been, and continues to be tailor made to my personal care assistance requirements, and is thus invaluable to letting me live as independently as possible every day. The office is staffed with really great people who are as friendly and professional as they are helpful, and they strive to ensure that my PCA needs are covered as well as possible. Whether I need a PCA for a new permanent shift, a temporary fill-in, an on call visit, or a replacement in a pinch when someone can’t make it to my place in the morning the office has always staffed me adequately and efficiently. And that is guided by Kevin’s vision for the company.

But the key component is that In Home puts the ultimate PCA personnel power into my hands, which is the way that it should be in my opinion. When I lived at home in Eau Claire the only PCA agency in town was a home healthcare unit that was run through a local a hospital and they did all of the personnel scheduling, so most mornings I didn’t know which home health aide, good or bad, was coming to help me in the morning until they arrived, and that was very frustrating. By contrast, at In Home they do all the behind the scenes stuff like advertising, hiring, background checks, training, etc. but I do the more personal interview and decide who comes in to help me and when I want them to show up. That way it ensures that I get help from competent PCAs who can handle my routine successfully, and that I can get along with day seven days a week. It’s been a great partnership and I have Kevin to thank for that.

Above all, Kevin Sullivan’s advocacy for supreme independence and his business acumen for starting and building In Home Personal Care to what it is today are something to be admired. And the great news going forward is that the day to day operations of the company will continue to run uninterrupted and stay committed to Kevin’s vision of providing quality personal care services to people with disabilities.

May he rest in peace.

(*A virus left my computer—and a large portion of the draft of this post—out of commission for the better part of this past month or this would have gone up more timely.)

Thursday, July 7, 2011

New EasyStand Blog Guest Post: A Step By Step Quest To Declare My Independence

My new guest post for the EasyStand Blog went live this week. Apropos of the 4th of July I wrote about how declaring my own independence is a challenge on account of my SCI. So please check out: A Step By Step Quest To Declare My Independence.

Friday, June 10, 2011

Wednesday, May 11, 2011

New EasyStand Blog Guest Post: Why I Have No Use For Change in My Life

My new guest post for the EasyStand Blog went live today. I explain why because of my limited quadriplegic manual dexterity I have virtually no use for pocket change in my life.

So please check out Why I Have No Use For Change in My Life.

Thursday, April 28, 2011

One Man’s Annoying / Aggravating / Interesting Access Picture of the Week

Once upon a time when I was barely a teenager I excused myself from dinner with my family at our local country club when nature called after one too many cherry Cokes (made with Coke and Grenadine, garnished with cherries). When I turned the corner inside the bathroom to head toward the urinals I was immediately and unexpectedly besieged with this truly amazing sight to behold: lined up in front of one of the urinals was a man in his mid-seventies standing with his feet a shade wider than shoulder width apart, the palm of his left hand was planted firmly on the wall about shoulder level so he could brace himself, in his right hand was a lit cigarette which he set on the edge of the top of the urinal between puffs, his pants were butterflied all the way open, and he was urinating completely hands free.

The latter was a feat unto itself because in the handful of times I tried it myself after that day it quickly became a fire drill of preventing myself from peeing on the floor, myself, or my shoes. It also reminds me of a joke that my good friend’s dad used to tell, which was that he asked his doctor for prescription for Viagra but wasn’t interested in using it for sex, rather he just wanted to take a quarter dose so he wouldn’t pee on his shoes. I took a college class from him once and he said that to the whole group and I was the only one who chuckled. But I digress…

The guy had set up shop in the middle urinal of three so I had no choice but to sidle right up next to him. As he exhaled a cloud of smoke and put his cigarette back on the urinal he asked, “How are you doing son?” I said fine and tried to tend to my business as quickly as possible, eyes tightly forward despite being curious as to the hands free “physics” at work to my left. I finished, washed my hands, and got the hell out of there leaving him in the same position that I had left him. How he managed to keep his urination going for the length of that cigarette I didn’t care to know.

So other than waxing nostalgic about an awkward one off bathroom experience from my youth why am I sharing this anecdote? Because only that guy with that particular urination stance in that specific set of circumstances would appreciate the “accessibility” of the urinal in the picture below because the bars would give him something to hold on to while he burned one during his hands free piss. Otherwise, unless somebody wants to do modified bicep curls or chin ups while they take a leak, I don’t understand how putting those grab bars at chest and overhead level would benefit anyone with a disability. Or how putting those bars and that sign there makes it a disability specific urinal for that matter. Granted, it’s been almost fifteen years since I stood at a urinal to urinate, but for most guys taking a leak is a two hand job: one to hold the pants/underwear aside and the other to aim, if you will. So why anyone, disability or not, would use those grab bars to hold onto escapes me. And even if they did it seems to me that they would be far benefitial if placed lower or to the side. As can often be the case with accessibility, someone completely over- or under thought that one. It just looks ridiculous. Or an accessibility fail, as the pic points out.

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Photo Source

Monday, April 11, 2011

New EasyStand Blog Guest Post: Accessible Parking for Pregnancy? Count Me Out

My new guest post on the EasyStand Blog went live today. I analyze a recent legislative-accessibility-accommodation-disability trend that I'm not a fan of—providing handicapped accessible parking for pregnancy. So please check out: Accessible Parking for Pregnancy? Count Me Out.

Saturday, April 9, 2011

One Man’s Annoying / Aggravating / Interesting Access Picture of the Week

This pic comes from an interesting news story from across the pond where a lady waited eight months to get a disability parking space outside her home for her son with autism and this was the result. In related news, “Caution: Geniuses At Work” is a construction sign that was nowhere to be seen when the city workers painted this spot.

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Tuesday, March 29, 2011

No Free Rides Podcast Guest

Living this spinal cord injury quadriplegic disability lifestyle for almost fifteen years now I have met a lot of interesting people and have had a lot of unique experiences. Late last week was truly another disability related experience for the books because I was invited to be a featured guest on my new friend and fellow quad Tiffiny Carlson’s podcast No Free Rides, which is a fun and edgy podcast for people with disabilities. Tiff lives in Minneapolis and is a freelance writer and blogger who is featured on publications like New Mobility Magazine, NM’s new blog Spin 2.0, and a fellow guest blog post writer on the EasyStand Blog. All in all she’s been in the blogger game for over eight years now and has an innovative website of her own that covers a variety of disability topics called BeautyAbility.com.

Anyway, Tiff’s had some pretty big name folks in the disability world on her podcast so it was cool and flattering just to be asked. We had a great discussion that covered a myriad of topics such as coping with disability, my career and job search, me starting the Minnesota Spinal Cord Injury Association, movies, dating, etc. It was fun talking shop with someone else with a wealth of SCI-disability experience. So big thanks again to Tiff for the invite! We’ve already kicked around the prospect of me becoming a regular guest, so that should be cool.

So check out my No Free Rides podcast with Tiff if you're down!

I should also add that the dating post that I reference a number of times throughout the podcast is my most recent EasyStand Blog guest post.

Wednesday, March 16, 2011

One Man’s Annoying / Aggravating / Interesting Access Picture of the Week

Minus there being no snow on the pavement due to a recent winter thaw, the two pictures below essentially epitomize my past winter experience. The first picture is of a huge snow pile that has taken up at least two whole parking rows in the parking lot of my local Target store ever since the epic, record setting blizzard that hit Minneapolis during the first week of December, which I griped about it a few weeks after it happened. As you can see, the pile still almost equals the height of two cars stacked on top of each other, and the crazy thing is that by the time I finally had a decent opportunity to snag a pic of it the pile had already melted quite a bit. But at that snow pile’s peak it was truly something to behold, and I might not ever see anything like it again either. Getting around and dealing with the snow in the winter time can be a regular pain in the ass for wheelchair users, but trying to get around this year was one of the biggest challenges of my life no thanks to the extra, unexpected, indescribably large amounts of snow like you see here.

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This second pic is of the spot at Target that I park in as much as possible during the winter because it’s a stand alone spot away from the rest, and thereby minimizes the prospect of me getting parked in by people who park on the striped access spots I need for my van’s ramp because they “don’t see the lines” or “didn’t know” on account of the snow cover (always a convenient excuse). This particular parking lot seems to extra bad in that regard, which is an unfortunate lesson that I’ve learned a few times over the years. The irony of this pic, I suppose, is that this spot was left relatively unscathed after all the December snow dumpings and I parked there freely all winter, but after another unexpected storm dumped almost another foot of snow a few weeks ago it got nailed because there was seemingly nowhere else to put extra snow. Needless to say, I had to park somewhere else because the snow was in my way. I plan to contact the store to have it removed. Regardless, this pic is a great representation of how hard it can be to find adequate parking that accommodates a van with a wheelchair ramp during snowy Minnesota winters.

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Wednesday, February 16, 2011

The Unexpectedly Inaccessible Vagina Monologues

In true outside of the box things that guys do to spend some time with a girl they like fashion I got talked into going to see a performance of “The Vagina Monologues” at Augsburg College in Minneapolis this past Sunday afternoon. “The Vagina Monologues” is a play created by Eve Ensler that is about female empowerment and individuality and is performed on Valentine’s Day in an effort to bring awareness to and end violence against women. Prior to that I had heard about it, seen small excerpts of it, and had a decent grasp of the gist of it, but it was something that I would have never considered checking out on my own, either in person or on video format, without some considerable coaxing—more likely than not in the from a pretty girl. Otherwise, my life would have seemingly carried on just fine without it. More than anything I figured that the subject matter by itself, let alone the the multiple recitations of the word vagina, would have me squirming uncomfortably in my seat. But, with the right kind of arm twisting, and me being game to try new things, I was soon all set to get my v-word on.

When going to any new venue for the first time questions of accessible parking, building access, and comfortable accessible seating inside immediately spring up. Since the campus music hall was quite literally a hop, skip, and a jump from my apartment building I scouted it out the day before while I was running errands. I quickly assessed that finding accessible parking was going to be an issue. One-way streets limited sidewalk parking options, nearby parking lots required campus parking permits, and most of the spots right by the building labeled for accessibility were “transfer only.” We could have just as easily walked/rolled there from my place but decided to drive and ended up parking “illegally” in a handicapped parking spot that required an Augsburg College permit, hoping they’d be lax about such violations on the weekend. (They were.)

As we approached the building I immediately discovered that there was no automatic accessible door opener, which is always annoying. Then worse, when we got inside the auditorium there was no wheelchair accessible seating. In those situations the three seating options are: 1) Sit all the way up at the front, which sucks because by the time you’re clear of the leg room of the people sitting in the front row you’re practically on the stage. My joke was that if we sat all the way up there that we would practically be able to smell the Vagina Monologues. 2) Sit in the aisles somewhere, but that was an extra challenge for us since there were two wheelchairs in our group of three. So not only would we have maybe blocked too much of the aisle, but one of us would have had to sit slightly separate from the group. 3) Sit at the very back, which in this case actually meant sitting behind the very back row. We decided on a hybrid seating formation by sitting in the back row but with both wheelchairs parked diagonally on each side of the aisle. What I found interesting was what a deterrent our partial aisle blockage created. Many people intending on going down our aisle to get to their seats would see us sitting there, stop dead, start going up the opposite aisle, and then all the way across rows of seats instead. It was an impromptu social experiment of sorts.

Now other than pointing out that some moron brought along her young child to such an adult show, and at one point let her run up and down the aisle making a slight racket (after a while she left the room, the door was closed behind her, and she didn’t return), that is the direction that I thought this post was going to go in. I thought that I was going to be taking the concept of building and auditorium inaccessibility, sprinkle in some past relatable experiences, and analyze the whole thing like I’ve done numerous times over in the past on this blog. Next thing I know, often to my own great surprise, I’ve banged out over a thousand words about the kinds of gloves I’ve worn in the past, or how I make mac and cheese, and wonder if I’m the only one who has found the material interesting. At the least, it’s a perpetual exercise of catharsis.

But all that changed shortly after the show began, when I found myself squirming awkwardly in my seat for a whole different and unexpected reason: out of nowhere I started feeling quite a bit sexually inadequate. The show itself is split almost equally between serious monologues of vagina related issues like female empowerment, loss of virginity, menstruation, birth, rape, etc. and more upbeat topics like alternative labels for vaginas, grooming, reclaiming the “c-word,” lesbian encounters, discussions about both hot and awkward sexual encounters, and demonstrations of various orgasm types. It was the more supercharged sexual stuff that spontaneously stoked some sexual self-consciousness in me.

To wit, in the show’s first segment all the ladies, the monologue-ers if you will, went over a variety of things that their vaginas would say if they could talk, and the sexual oratory included things like “yes,” “more,” “harder,” “faster,” “don’t stop,” “this way not that way,” “that’s the spot,” “yummy,” “yes, please,” “f—k me!,” “oh s—t!,” etc. Then later on in what was easily the most fun and entertaining segment of the performance one of the monologue-ers does a solid five minute, enthusiastic, and borderline graphic oral demonstration of the various types of female orgasms, and the applicable moans they induce, along with physical demonstrations of the multiple sexual positions that apply, such as the “rapid fire,” “the diva” (i.e. missionary position where one leg kicks straight up in the air at the magic point), “the barker,” the “triple-multiple Big O”, etc. Everyone in the audience went nuts, but much more so it was the ladies who were clapping, whistling, cheering, whooping, and hollering, with one catching the implied “O” spirit more than anyone and she yelled out, “Yeah, you go girl!” Presumably, plenty of the ladies in the audience were living momentarily, vicariously through the monologue-er and/or instantaneously fantasizing/reflecting on their own sexual experiences. Because really, what woman doesn’t want a marathon session with sexy sculpted gentlemen giving them “the diva”?

But I couldn’t help but sit there and think, “Well I can’t do that anymore, or that, or that…” and it was suddenly very sobering. Because when you are a spinal cord injury quadriplegic who is paralyzed from the chest down, having physical, full body, multi-positional, all over the room sexual activity is just not in the cards, despite the extreme want for it. Moreover, by definition of this disability there is a certain amount of sexual dysfunction involved as well. It’s disappointing, it’s frustrating, it’s difficult to deal with at times, etc., but it’s just another unfortunate aspect of this particular lifestyle. It is what it is.

Other than some very limited horsing around that I did with my then girlfriend in the hospital after my SCI, which is really hard to do when a hospital bed is involved and nurses and family can come in at any moment (i.e. frustrating!), my first true exposure to post-SCI sex and sexuality issues wouldn’t come until I was almost discharged from rehab from Craig Hospital. All residents that were within their last two weeks of rehab were put into this extra daily class that was sort of a “here’s all the other SCI related things that didn’t come up in PT or OT that you need to know before you go home” unit. One very uncomfortable day was all about post-SCI sex. First, we talked generals about dealing with the mechanics of post-SCI sex: the realistic levels of sexual dysfunction and impotence, the difficulties/frustrations of achieving/maintaining erections for men, the inability for women’s bodies to produce natural sexual lubricant, about the lack of sexual sensitivity/pleasure, that orgasms can result in autonomic dysreflexia, that male ejaculate can possibly be differently colored due to the body’s lack of regular expulsion, etc. Then we watched an educational film that can best be described as cripple porn, that showed a handful of couples in various disability combinations (e.g. SCI guy and able-bodied wife, a couple that both have SCI) doing fairly graphic couple sex stuff. (FYI not a recommended watch. Nope.) Then third, the guys and the girls went to separate rooms to talk shop in more of an open, candid, and comfortable setting.

In my room it was me—an eighteen year old with a girlfriend—a late twenties paraplegic who was engaged to a very cute and supportive blond, a forty-something para who was married with three young kids, and the token quad who was “in the know” about SCI sex and alternative SCI sexual techniques. After he asked if we had any questions thus far about the lecture or video, which we didn’t because it was awkward, one by one he started pulling things out of this small black magic sex satchel. He started off by saying that if you were lucky enough to achieve/maintain an erection then more power to you. But for those who struggled, the alternative options included Viagra (or Cialis, et al), which doesn’t always work for SCI folks; a vacuum pump a la the Swedish pump that Austin Powers tried to deny “wasn’t his bag, baby”; an electro stimulant, which seemed more like a cattle prod for your junk than anything; using vibrators or dildos in lieu of the impotent/flaccid penis (if that’s the case); and most invasive of all, a surgical procedure that places small balloons in the spongy material of the penis shaft so that when you want to achieve an erection you use an external pump to fill up the balloons. Once he took us through the paces he finally said something like, “Honestly, talking about half this stuff freaks me out a little but I have lay out all the options for you” and we all let out a collective sigh because we were all thinking the same thing. But the point is that many quads have to jump through some wild hoops just to be able to have sex, and that can make people feel unattractive, unsatisfying, and asexual.

Now that being said, it is not by any means to suggest that quads can’t have healthy, active, successful, mutually pleasurable sex lives, even involving sessions that include some mind blowing stuff. But by the same token it does, unfortunately, have it’s limits. Again, because the whole body isn’t involved and the mechanics are a little different. For example, unrelated things going on with the body (e.g. bladder issues) can spoil the fun at inopportune times. Without that direct nerve/sensory/passion/emotional connection between the brain and the penis it means that even hot and heavy make out/foreplay sessions may not result in an erection the way it does with able-bodied guys, which in turn can lead to embarrassing and sympathetic “Hey it happens to other guys too” territory or unintentionally leaves the impression that you’re not turned on by the girl. Clearly, locations where you can have sex are limited, so by default that takes away some of the excitement and spontaneity of the act. All in all it requires a partner who is patient, understanding, and open minded.

The other relatable perspective quickly worth mentioning is the feeling, depending on how much you choose to dwell on it, that you won’t and don’t stack up in the overall sexy, exciting, satisfying, performance category with other able-bodied guys. An unfair comparison from jump street to be sure, but one that naturally exists nonetheless. But the bottom line notion is that everyone wants to fully satisfy their mate, or that should be one of the primary goals in my opinion, and it’s real hard to not feel like the aforementioned limits prevent that for quads. Moreover, even if things are really, really, satisfactorily great in that department with your girlfriend/wife the very realistic reality that you will doubtfully be the best she’s ever had can be difficult to deal with as well.

So cutting back the to the show, all those interrelating thoughts and issues hit me out of nowhere mid-performance and it was unexpectedly quite a bummer. And being there with someone that I was attracted to somehow seemed to heighten those uncomfortable moments and inadequate feelings from my perspective. All of that being said, as we left the show I felt thoroughly entertained and I was real glad that I checked it out, but at the same time I couldn’t help but wonder if the subject matter of the “The Vagina Monologues” was just as inaccessible as the venue that hosted it.

Tuesday, February 8, 2011

On “Glee,” Dreams, and SCI Therapies

I will admit at the onset that this post is quite belated. I meant to finish and post it about a week after my last “Glee” post went up this past May so that there was much more congruency and relatability but I kept writing about other stuff instead and it kept getting pushed back. I also realize that proceeding to write a second pretty detailed blog post about “Glee” doesn’t exactly backup my previous denial of being a “Gleek.” A super fan of the show I still am not but I do continue to watch regularly, if anything because from my perspective I have found the show to be an interesting case study on spinal cord injuries in a number of ways.

For example, last time I broke down the controversy and discussed my thoughts involved with the fact that an actor who is able-bodied is playing the part of the paraplegic character, Artie. Many people in the disability world have been up in arms over such a notion, especially when it is such a featured character on such an mammothly popular TV show. To wit, check out all the articles I cited last time plus this pretty detailed and critical article about the Artie able-bodied actor dichotomy, how he does a poor job making himself a believable paraplegic and regular wheelchair user, and the show’s handling and portrayal of disabilities in general.

By extension, the focus of this post revolves around a few things that came to light in last spring’s “Dream On” episode, namely dreams and SCI therapies. Towards the beginning of the episode each glee club student is implored to write down their dreams on a piece of paper. One of the girl characters named Tina asks Artie what he wrote down, and with a little more urging he responded that his dream is to dance, but then quickly adds that it’s a stupid dream because it will never come true on account of the paralysis to his lower extremities. She also asks him to do a partners dance routine with her, which leads to some awkward and unsuccessful attempts. On both accounts Artie ends up wanting to be left alone, presumably feeling inadequate as both a person and a boyfriend. Later that day or the next day (I forget which) Tina approaches Artie with an armful of the latest research materials on therapies that could assist him in walking again. At that point Artie demurs but on account of her enthusiasm he takes the materials anyway.

Now when TV shows and movies start dipping into that “magic SCI therapies” territory it makes me (and I assume a lot of other people with actual SCI) cringe because it seems like a lot of times they do one of two things: 1) They give the impression that healing paralysis is simply a matter of getting the right kind of therapy, glossing over the fact that in most cases it’s a permanent diagnosis until scientific breakthroughs (e.g. stem cell research) result in a viable cure. 2) They suggest that living with paralysis is a below average, unhappy, day in and day out depressing lifestyle. Case and point to the latter theme: the premise at the end of the movie MILLION DOLLAR BABY that the Maggie character would much rather die than live the rest of her life as a quadriplegic, which was offensive to many people living with paralysis. Arguably, the most widely seen example of the former theme was the sub-plot in AVATAR that if the paraplegic character Jake successfully infiltrated the Na’vi people via his avatar technology and fed Colonel Miles insider information that Miles would ensure that Jake “got his legs back,” as if it were just that simple. And might I quickly add, no cure for paralysis all those years in the future? Man let’s hope not!

Back to the episode, now full of hope Artie visits the school counselor, Emma, to talk to her about said therapies. Where I thought the show did a good job was how Emma interjected a solid dose of reality, reminding Artie that he had sustained a pretty serious spinal cord injury and that there weren’t a lot of special therapies that were going to get him walking again right away, if ever. Now with Artie’s bubble burst, he leaves the therapy materials behind in Emma’s office, turns around and wheels out like a depressed sad sack, presumably having given up hope. That ties into the second TV/movie theme that I just mentioned above.

Smash cut to a little bit later in the episode and we find Artie shopping at the mall. Tina approaches him and he seems to be in much improved spirits. He quickly mentions that he took her advice and saw the therapists and that his therapy was going far better than expected. Then the camera pans down to Artie’s feet where you not only see one foot start to move, but then both feet come off of his wheelchair foot cage. At that moment I remember thinking, “What? No f------g way!” Then he proceeds to not only stand up from his chair, but he breaks into a full song and dance routine featuring the song “Safety Dance” by Men Without Hats. When the flash mob style mall dance party ends it quickly cuts back to Artie sitting back in his wheelchair and it’s revealed that the whole sequence was just Artie’s daydream. Here’s a link to the video, but it starts after Artie stands up from his wheelchair chair and ends a split second after he plops back down in his chair.

To many people in the disability community that whole dance sequence exacerbated the able-bodied actor playing a person with a disability controversy. Many of the comments that I’ve read about it described that sequence as offensive to SCI wheelchair users. Specifically, that “Glee” and the able-bodied actor playing Artie were throwing the fact that he didn’t really have a disability in the faces of all of us who really do.

Being in a relatable position I can clearly understand where those gripes are coming from. But after factoring in the scene in its entirety I ultimately came down on the side that I didn’t have a problem with it. The main reason for that is that based on my life’s own SCI experiences I found that kind of sequence quite realistic because I daydream about doing able-bodied things all the time. And much like the Artie dance sequence, those daydreams can be triggered by numerous situations in numerous locations, and can also involve very lengthy, detailed brain-fueled scenarios.

For example, during the summer I often daydream about the ability to dive in the lake at my parent’s cabin to cool off. When finding accessible parking is a pain in the ass or other similarly inaccessible situations creep up I daydream about parking anywhere I want and having unlimited access. Almost every time I’m around my niece and nephew I fantasize about getting to be more active with them and babysitting them on my own (for more about that see my post on the EasyStand Blog about being an uncle with SCI). Getting in and out of bed with ease on my own is a common one. Going on vacation or a lengthy road trip untethered from all the things that make it difficult springs up fairly often as well.

Being single for as long as I have a whole plethora of my able-bodied daydreams revolve around women: the want to be more approachable without the wheelchair;  showing off the buff bod I no longer have; the desire to sit or cuddle up next to a girl on the couch or other close contact situations to more easily be able to start generating that subtly obvious “I like you” chemistry; being more of a helping hand when it comes to moving or home repair type situations that score you close, one on one time; being able to stop by her place whenever I want without stairs or other inaccessible obstacles preventing it; opening the door or pulling her chair out on a date instead of vice versa; being able to step in to plant a kiss on her instead of needing her to bend down to my level first, which also often quasi-requires her to make the first move; etc. Whenever I’ve felt like I’ve been passed over for someone who’s able-bodied in terms of a potential relationship, those “I wish I could have been able to do more able-bodied things to ‘woo’ her” daydream thoughts tend to kick into a higher gear, whether disability was a factor in her decision or not. It’s just the nature of the beast.

Related, one of my most recent guest posts on the EasyStand Blog was about what I would do if I could utilize virtual reality technology to do able-bodied things, and since all of those items apply to the aforementioned daydream list I refer readers to that post for my more detailed thoughts on the matter.

My point is that I didn’t have a problem with the Artie daydream dance sequence because it’s deeply rooted in my own reality. Moreover, I would say that well over half of the night time dreams that I’ve had since sustaining my spinal cord injury have consisted of me being in some form of able bodied state, and I think that is a common thing with many other SCI folks as well. Christopher Reeves used to say that his dreams always consisted of him walking around. When you’ve lived an able bodied life for a certain period of time the “dream zone” of your brain doesn’t exactly switch to a strictly SCI-disability perspective automatically.

I slept awful for the first few weeks right after my diving accident and not very well for up to a few months later either because I was predominantly a stomach sleeper most of my life and I had a hard time being forced to sleep on my back every night in the hospital. Thus I rarely dreamed because I didn’t hit that REM sleep zone when I was constantly sleeping like crap. But once I adjusted my dreams were always fully able-bodied and it was a major bummer to dream about doing fun high school things with my friends then wake up to a quadriplegic body in a hospital bed. But as time went by over the years I just got more and more used to it and adjusted to it. I’ve gotten to a point now where if I have a good able-bodied dream I can wake up and go, “Damn, that was a good one” or “That would have been fun if it was real.” I would say that the most common dream theme I have involves me standing up from my wheelchair, walking away and looking back at it thinking, “Well that was easy, why haven’t I tried that before?” Another common theme has me able to easily roll my wheelchair up stairs like an ATV, and again I find myself wondering why I don’t do that more often. Not quite an able-bodied thing but still extends beyond straight disability.

But the more interesting thing is that armed with fourteen plus year’s worth of SCI life experience, over the last few years my dreams have more often than not taken on more of an SCI/able-bodied hybrid form. So a frequent dream sequence will start with me walking around, etc. but then the logical portion of my subconscious must kick in and brings me back to the SCI world. So I might suddenly think to myself in my dream “Wait I can’t go down these stairs.” A lot of times if I have to go to the bathroom in my dreams it’s still not by standing over the toilet to take a leak like normal, and I still search out an accessible bathroom situation. Or if it it’s a sex dream they often don’t involve a lot of lower body sensational pleasure because I’ve found that if I can’t feel parts of my body in real life, in that case my “man bits,” then I usually don’t in my dreams either.

The best example of the latter is a dream I had recently. I was hanging out a pool with some friends and my sister and I had a “Screw it, it’s been fourteen years and I’m finally going for a swim” moment. I threw off my shirt and walked to the edge of the pool. Behind me I heard my sister say, “Good for him” because in a lot of respects I’ve always limited myself in what I can and can’t do with my disability, as well as been pretty guarded about bodily things I’m self-conscious about vis a vis my SCI. In this particular dream’s case, the scars on my torso from chest tubes that were put in for both my pre- and post-SCI collapsed lung surgeries, the big gross scar on the back of my neck from my neck fusion surgery, and the “quad gut” that has me looking a few months pregnant. In that dream I just let it all hang out and dove in the water. But although in the dream I was gliding through the water with full able-bodied ease, I could only feel the coolness of the pool water on my face, neck, hands, arms, and chest above the nipple line, as is the case with my level of sensitivity in real life. Those kinds of dreams are very strange and interesting though obviously, both to have and to wake up from.

The last Artie, SCI therapies, “Glee” issue to quickly cover came up in this season’s “A Very Glee Christmas” episode. Artie’s aloof girlfriend, who inexplicably still believes in Santa Claus, tells a a mall Santa that all she wants for Christmas is for Artie to walk again, and he agrees, which sets up an awkward plotline inside and outside of the episode. At the end of the episode we find Artie wearing a pair of mechanical legs and in Christmas miracle fashion he is able to stand up and walk. I would have called BS on that too had I not already seen this cool video of paraplegics regaining the ability to walk via mechanical eLEGS from Berkeley Bionics. Can’t wait for the quadriplegic version to come out!

If any more interesting “Glee” SCI related issues come up on the show you can bet that I’ll cover it.

Friday, February 4, 2011

New EasyStand Guest Blog Post: The Need for More Education About Disabilities for Kids

My latest guest post on the EasyStand Blog went live today. The discovery that an offensive disability gesture from my youth has continued survive led me to analyze the need for more education about disabilities for kids, starting with books.

So please check it out: The Need for More Education About Disabilities for Kids

Wednesday, January 26, 2011

One Man’s Annoying / Aggravating / Interesting Access Picture of the Week

The picture itself isn’t all that interesting, but the story that goes with it is. First, the city painted off a new disability parking spot around a car that was already parked there, then they threatened to tow the car for being in violation of parking in a disability spot. Now I’m all about busting people parking illegally in accessible parking spaces, but in this instance a few people forgot to put their thinking caps on.

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Monday, January 17, 2011

Apparently, I’m “Gettin’ It Done”

I have a hard time doing anything that comes across as me patting myself on the back, but in this rare instance it is worth noting that my friends at the Sam Schmidt Paralysis Foundation just started a new column about people with spinal cord injuries who are "Gettin' It Done." I was one of the first four people featured, describing me as a good guy attorney and this blog as "useful and always entertaining." It was a cool surprise. My great thanks to the fine folks at the SSPF. You can check out the blurb at the following link: http://www.samschmidt.org/news/news5_191

Sunday, January 16, 2011

Quad Engineering: Making Mac & Cheese

The fact that I am taking the time to write a blog post about making Mac & Cheese makes me feel like I am twelve years old, yet at the same time the foregoing almost perfectly demonstrates a microcosm of my perpetual lack of even simple culinary skills on account of having paralyzed quadriplegic hands with no voluntary finger movement. Even at thirty-two years old, like any red blooded American, I can get some pretty mad hankerings for Kraft Macaroni & Cheese every now and again. I say Kraft brand Mac & Cheese because although my pallet has discriminated against the generic kinds less and less as I’ve gotten older, Kraft is still the best by far, and as much as possible that’s still the kind I’m eating.

But for the better part of a decade now I’ve been largely deprived of that good stuff because I haven’t been able to prepare it myself. The main culprit has always been the part of the preparation process that involves taking the pot with scalding hot water off the hot stove, moving it to the sink and pouring the hot contents it into a strainer, and then putting the hot pot and noodles back on the stove. It’s a key step that I haven’t been able to do on my own. If the sink is across the room from the stove, as was the case when I lived with my parents through college, then the only way I could strain the pot would be to carry it on my lap from one side of the room to the other. That’s not happening. Similarly, if the sink and stove share the same stretch of counter, as is the case in my current apartment, sliding the pot off the stove burner and down the counter to the sink still leaves my lap vulnerable to potential burns if the pot tips or water spills out. That aside, with very limited grasping ability the act of tilting the pot to dump out the water and noodles leaves my hands vulnerable to burns from the outer edge of the pot as well.

So making mac & cheese on my own has been a no go for over fourteen years. Instead, I’ve had to have family or PCAs do it for me, which has always felt very limiting. But all that changed a few months ago thanks to a little quad engineering. I was making something for dinner that involved scooping hot, wet food with a strainer spoon and suddenly it hit me that I could use that same spoon to scoop the mac & cheese noodles from the pot with the hot water to a second pot to finish the cooking process, thereby eliminating the need to move a hot pot of water over to the sink to strain the noodles. So I tried it and it worked pretty well, except for the highly tedious process of fishing noodles out of the pot with hot water spoonful by spoonful.

The second time I made it I used much less water to cook and soften the noodles so that made it a little bit less of a fight to fish the noodles out, but needing to use about twenty five total spoonfuls to transfer them all was still annoying. But I was actually making mac & cheese entirely on my own so I didn’t care. The third time I made it I couldn’t grab the big cooking pot out of the cabinet below my stove so I cut to the chase with the smaller pot I had been using just to mix the cheese, butter, and milk with the noodles in the second cooking phase. That pot was small enough to slide it safely across my counter from the burner to the sink, then I used the handle to tip the pot and pour out the hot water into my sink. Unlike my bigger cooking pot, which has two stubby hand holds on the sides, the longer handle on the smaller pot allows me to keep my hands away from the hot pot surface while I dump the water. Then I slid it back to the stove and finished the job. And that’s how I’ve been making mac & cheese ever since because it’s eliminated the strained spoon transfer step.

So just like that, with a little quad engineering making a meal that once seemed impossible to prepare on my own has suddenly become very routine. At the least, it’s been fun getting the chance to eat like a teenager much more often on my own terms. Next up: trying to figure out how to cook with the oven without burning myself. Then I’ll really start kicking some solo culinary ass.

Thursday, January 6, 2011

New EasyStand Blog Guest Post: Like, Totally 80’s Music Video Based Disability Perspective

My latest guest post on the EasyStand Blog went live today. I turn an aspect of a classic 80's music video into a statement of my very unique "2-way mirror" disability/able-bodied life perspective on account of my SCI.

So please check it out: Like, Totally 80’s Music Video Based Disability Perspective.

Monday, January 3, 2011

New Year’s Eve

New Year’s Eve was pretty low key around the Dean pad this year. I planned to have a few people over but one’s flight got delayed until pretty late and didn’t end up coming by at all and the others decided to go out downtown Minneapolis instead. I had the option of joining them but I wasn’t interested in going very far. As I discussed in my last post, the Minneapolis area got hit with a ton of snow and it’s made parking and getting around via wheelchair difficult in certain places. On top of that the Twin Cities was getting hit with a frozen rain storm so driving around town wasn’t advisable. And all that aside, I wasn’t interested in going anywhere overcrowded anyway. I’ve gone out to bars on New Year’s Eve and dealt with crowds in the past and it’s hardly fun trying to move around in an asses to elbows environment.

I bring this up not to lament on the fact that I ended up flying solo on New Year’s Eve but to make it applicable to this interesting blog post I read last week about the New Year’s Eve dilemma for wheelchair users. It gets a little heavy on the guilt factor, but the premise is that wheelchair users are limited in which bars, clubs, house parties, etc. they can go to celebrate New Year’s Eve on account of a lack of accessibility of many places. So the dilemma is that the wheelchair user’s friends might want to go to the more fun locales but either feel held back because they have to account for the accessibility factor and/or feel guilty for ditching that friend to go to an inaccessible celebration spot. On the other hand, the wheelchair user gets sick of the same accessible haunts, can’t go to the inaccessible spots (or doesn’t feel like the extra effort of making it work), and/or may feel guilty holding their friends back from doing something more fun just so they can stay included in the group venture.

Like I said, it gets a bit heavy on the guilt factor, but it sheds light on a topic that all wheelchair users can relate to on some level. The last time I went out to the bars on New Year’s Eve the evening started out at a friend of a friend’s accessible apartment (with a wide open accessible bathroom) and then moved on to the bars. It was also a cold and snowy night with a lot of newly fallen snow on the ground. I tried unconvincingly to keep the house party going and skip the bars but got quickly overruled. Parking was a mess, crossing streets and rolling down the sidewalk got tricky with the snow, and I had to be lifted into a few bars that just had steps, which is something that I’m not crazy about when the people lifting me have been having more and more to drink as the night goes on. So in that case I tried to hold people back from the fun that they wanted to have, and then ultimately had less fun myself on account of all the extra hurdles I had to jump to celebrate with my friends.

So as much as I was disappointed that I didn’t end up having company on New Year’s Eve, taking all that above into consideration, having a few drinks to celebrate on my own didn’t end up being too bad a night after all.

Happy New Year everyone.