In my new EasyStand Blog post I break down the unprecedented amount of PCA Upheaval that I have succumbed over the past few months.
Saturday, April 27, 2013
Saturday, July 28, 2012
New EasyStand Blog post: Right of Way? More Like Get Out of My Way!
My new EasyStand Blog post covers the number of ways that people get in the way of me and my wheelchair while I’m going from place to place. Please check out “Right of Way? More Like Get Out of My Way!”
Thursday, April 26, 2012
New EasyStand Blog Post: Help Wanted Occasionally, but Don’t Linger
Please check out my new EasyStand Blog post about people that offer to help me that are both pushy and linger: Help Wanted Occasionally, but Don't Linger.
Wednesday, January 11, 2012
A Positive Inaccessible Taxi-ing Situation Update
Back in late September I wrote a post on the EasyStand Blog called “An Inaccessible Taxi-ing Situation” that was about inaccessible taxicabs in New York City. Read the post for more details, but to quickly recap New York recently made a decision to change their fleet of cabs to the so-called “Taxi of Tomorrow” but the problem is that the Taxi of Tomorrow (a Nissan NV-200) is not wheelchair accessible, so countless people with disabilities who use wheelchairs cannot hail a cab in New York. Moreover, it will be the taxicab in service for the next ten years which makes it even more difficult for people who use wheelchairs to get around via taxicabs. Clearly, that is a big problem. Currently, only 231 out of 13,000 New York taxicabs are accessible, which is a horrible and unacceptable ratio for one of the biggest cities in the world.
More frustrating is that the decision about the new cabs was made with full knowledge that they were inaccessible and that some cheaper accessible options were available as well. Even worse than that were the very offensive remarks that New York Mayor Bloomberg directed at wheelchair users who have advocated for greater access to the city’s taxicabs. Most notably, he said it would be “too dangerous” for wheelchair users to try to hail a cab, that most taxi drivers would “pretend they didn’t see them,” that wheelchair users “sit too far from the driver to establish a dialogue” and therefore “they would not tip well.” He also suggested that the cabs will weigh too much, use too much gas, and that there is too much “dangerous” space between the backseat and the front of the cabs and that people were going to get hurt because of it. Yikes. Ridiculous.
As you could guess, this inaccessible taxi situation didn’t fly with the disability community and accordingly the United Spinal Association filed a disability discrimination lawsuit in federal court in New York in January 2011. As far as that goes, some good strides have been made recently to make those taxicabs more accessible. First, on December 20, 2011 Governor Cuomo and lawmakers reached a deal to approve a bill that calls for 6,000 new street-hail licenses to be issued to livery cabs in the outer New York City boroughs and upper Manhattan. But Cuomo threatened to veto the bill unless the legislature addressed the low number of the city’s accessible taxi vehicles. The result is that there will now be 3,200 more accessible taxi vehicles on New York roads. The deal to improve the city’s overall accessibility was applauded by tens of thousands of New York veterans and people with disabilities.
Then about a week later, in what was hailed as a landmark victory for the disability community, a federal judge ruled that New York City’s Taxi and Limousine Commission was in violation of the Americans with Disabilities Act for failing to provide access to taxicabs for wheelchair users. The ruling states that until the TLC produces a comprehensive plan to provide meaningful access it can only issue new medallions to wheelchair accessible taxis. In his ruling U.S. District Judge Greg Daniels wrote, “Meaningful access for the disabled to public transportation services is not a utopian goal or political promise, it is a basic civil right.” Amen.
In in this fight that has lasted more than a decade Judge Daniel’s ruling was a very huge victory, but the war to get all of New York’s taxicabs wheelchair accessible rages on.
The article linked in the paragraph above has a lot of good quotes about disability independence, etc. so be sure to give it a full read.
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.
Saturday, September 25, 2010
Happy Birthday, Christopher Reeve
Today is/would be Christopher Reeve’s 58th birthday, so I always like to make brief recognition of that. I had some expanded thoughts about that in last year’s post, and I still echo those sentiments, so go check that out if you’re interested (FYI one link no longer works). What I will add though is a link to a Reeve Foundation blog post that commemorates his birthday and legacy with some brief retrospective thoughts from someone who is involved with the Reeve Foundation as well as fan, supporters, and Reeve Foundation community member comments about Christopher. Happy would-be 58th.
Thursday, August 19, 2010
Must See SCI TV: Breakthrough with Tony Robbins
One evening a few weeks ago I was working at the computer while peeling through my DVR and I got an out of the blue text from my good friend Kurt, who also doubles as one of my two co-founding partners of the Minnesota Spinal Cord Injury Association nonprofit we’re starting, that read, “Are you watching the Tony Robbins special on NBC?” I’ve never been a fan of those “inspirational speaker/life coach” types who charge people oodles of money for their books, seminars, etc. so I very facetiously replied, “Not a fan, is he going to work a miracle or something?” A quick reply came back simply saying, “Turn now to NBC.”
So I obliged him and immediately flipped the channel to NBC to find fifteen minutes left of a “Breakthrough with Tony Robbins” episode that featured a quadriplegic named Frank and his wife Kristin. Frank broke his neck and sustained a spinal cord injury diving into a hotel pool on his wedding night, and the couple had been struggling both independently and collectively with their new, unexpected lifestyle ever since. I’m not going to do a blow by blow account of the episode in this space since you can just watch the episode yourself, but the premise is that Robbins puts them up to a handful of challenges, again both individually and collectively, that changes their outlook on how they can live their lives in light of everything that Frank’s new disability brings to the table (e.g. skydiving, spending time apart for the first time since his accident, playing “murderball” (aka quad rugby) in front of his family, and working on and driving a desert truck since racing one was his dream). Then there’s one other big surprise at the end.
Of course, some of the thoughts that Frank (and Kristen) shared hit home for me since I parallel them in a lot of ways: second guessing his choice to dive into the pool, grieving the life you should have had, having a loved one have no choice but to help him with his personal cares, not having the ability to sense his wife’s loving embrace, feeling like he’s holding his loved ones back, self doubt about the ability to start a family, the frustrating strive to be self supportive, hesitations about getting outside of his comfort zone, etc. And then yet despite all the hard struggles and emotions of living with paralysis, gaining that strong sense of pride and accomplishment for the things you can do as well.
If you live with SCI or know someone with SCI it is a pretty powerful piece. Heck, I recommend it to anyone interested in checking out an inspiring personal journey about overcoming personal demons and adversity, and ultimately achieving potential you didn’t know that you had inside of you. And dare I say it: a new found respect for Tony Robbins, if you are like me up to this point.
However, the caveat is that the clock is ticking because it is only available to be viewed online until September 4th. Here is the Hulu episode link, or click the link above to go to the NBC show site. I would have brought this to people’s attention sooner but I actually just got around to watching the balance of the episode that I missed tonight. So tune in before it’s too late. Enjoy.
Wednesday, August 4, 2010
Get a Clue
I was thinking about calling this “One Man’s Annoying/Aggravating/Interesting Anecdote” or something like that and start a new blog segment, but I decided “Get a Clue” was much more apropos. The point is that I wanted to pass along a few links to a fascinating handicapped parking story I came across not long ago. Here’s the link to the local news story (“Woman sues over handicap parking ticket”) and here’s the link to a related follow up blog post (“Is This Able-Bodied Woman Entitled to Handicapped Parking?”). I can tell you very quickly that the answer is “no.”
The bottom line is that an able-bodied woman illegally parked her Mercedes SUV in a handicapped parking spot, but the more detailed breakdown is that she parked there because her arm was still in a sling from a recent surgery, the surgery left a “huge scar,” she was still on medication, it was raining hard, and she ran into the store for just a few minutes. She returned to her car to find a $300 parking ticket. Pretty open and closed case—busted, pay the fine, live and learn.
But what makes this story fascinating are the assertions that she made after the fact. Now she admitted that she parked in a handicapped spot on purpose, that she does not possess a disability placard, that she does not have a disability, and that what she did was wrong. Still, given the aforementioned circumstances—the arm sling, the “huge scar,” the sore arm, being on medication, and the “torrential” rains—she asserted that she had a disability “that day” and therefore for her to have parked anywhere but the handicapped spot was “unavoidable.” Given that defense, she argued that the $300 parking fine was way too high, and subsequently went on to sue the town of Danvers, Mass. after the parking clerk refused to dismiss her ticket. The nerve! Ridiculous. I’ll just assume that her case won’t get too far.
Unfortunately, these kinds of “I’ll only park there for a few minutes” sets of circumstances happen all the time, all over the country, every day, and has prevented me from finding a parking spot dozens of times over the years. But this inexplicable set of events is a new one on me.
So with that all I can really say to this lady is, “Here’s a quarter (or 1200 in this case), get a clue!”
Tuesday, July 27, 2010
New EasyStand Blog Guest Post: Reserved Parking (Thanks to the ADA)
My latest guest post on the EasyStand Blog has now gone live. Acting within the spirit of yesterday’s 2oth Anniversary of the ADA I shared an anecdote about the accommodation that I am most proud of obtaining: a reserved accessible parking spot at my law school. It took a lot of patience, determination, and back and forth discussions, but it ended up working out better than I could have expected.
So please click the following link to read Reserved Parking (Thanks to the ADA).
Wednesday, June 2, 2010
Article: We Just Don't Know That Much About The Spinal Cord
Sunday, March 14, 2010
A Classic Call Out
Namely, that I more than many others realize that there are plenty of hidden disabilities out there, and the last thing I'd ever want to do is ream somebody out only to discover that they have a fake leg or something. That situation actually happened to a family friend once. He saw a guy parking his Harley motorcycle in a handicapped spot and called him out about how illegal and selfish he was being only to have the biker pull up his pant leg and reveal his titanium prosthetic leg. Thus he was fully justified in parking where he was and our friend was left doing all that he could to dislodge his foot from his mouth. Had I opened my mouth as much as I've been inclined to over the last thirteen plus years I've been driving from my wheelchair it would only have been a matter of when, not if, I would have experienced a similar, potentially mortifying situation myself.
One of the other primary reasons is that, unfortunately, I feel like more often than not I would probably just be wasting my breath. Because as much as I've always liked to think that calling someone out or even shaming them in public a little bit will make them open their eyes and change their behavior and quit wrongfully using handicapped parking it seems like that is hardly ever the case. I've seen it too many times where people just pretend to ignore you and/or walk past real ignorantly like they don't care. Or they claim to have some right to park there even though it's really only justifiable to themselves, and thus they don't believe that they're in the wrong no mater what you say to them. For example, they're using it because they drive their disabled grandma to medical appointments, but if grandma is not in the car then they shouldn't still be parking in accessible spaces. In fact, in most jurisdictions it's illegal and you should get a ticket for it. And worse of all is how ultimately many of these people start to feel entitled to use the accessible parking. So instead of using their parking placard, however obtained, only when they can't find other close parking spots (even though that's wrong too) they just seek out the closest accessible spaces immediately and without recourse. I always love it when some of those folks try to talk shop with me, as if we're on the same level of need, about how bad the handicapped parking situation is in a given location. Yeah, I'm really sorry that you had to drop Aunt Gertie off at the front door and walk an extra 20 feet after you parked in a regular spot instead of getting an accessible spot. On numerous occasions when I was in college I had able bodied students and staff cutting me off to park in accessible campus parking spots we were in the same "competition" for. They knew I was in a wheelchair, we both knew that that they had nowhere near the absolute need to park there that I did, but they hardly deferred to me nonetheless because they had built up this feeling that they were equally entitled to them. I probably missed a few dozen classes in total as a direct result because I had no other parking options.
But with all that being said, it really tickled my fancy to come across a handicapped parking related article not long ago that included the classic, classic call out note pasted in quotes below that someone with a disability, or someone looking out on behalf of people with disabilities, left on the windshield of someone who was parking in an accessible spot illegally. Given the opportunity, this is definitely how I would prefer to bring an accessible parking violation to somebody's attention. Check it out:
"This is not a ticket, but if it were within my power, you would receive two. Because of your Bull Headed, inconsiderate, feeble attempt at parking, you have taken enough room for a 20 mule team, 2 elephants, 1 goat and a safari of pygmies from the African interior. The reason for giving you this is so that in the future you may think of someone else, other than yourself. Besides, I don't like domineering, egotistical or simple-minded drivers, and you probably fit into one of these categories.
"I sign off wishing you an early transmission failure (on the expressway at about 4:30 p.m.). Also, may the Fleas of a thousand camels infest your armpits. With my compliments."
The other side was signed "Shame on you. Where is your Handicap Plaque."
Now isn't THAT something? Fantastic. Love it. Nothing like calling someone out in general, but also in a way that makes them go, "Camel fleas, what?" But the real kicker in all of this is that it was actually the offending party that submitted this note to the paper. His reply follows:
"I do have a handicap parking permit, but was not aware that I was in a handicap spot. I should have been more careful. Nonetheless, the repugnant nature of the "violation" was quite disturbing. It seems to me that a "friendly reminder" would be more effective."
So there's a few things to chew on here. First, this notion that he or she has a handicapped parking permit but was somehow unaware that they were parked in an accessible spot. Say what? Anybody that has a disability placard or license plate and thus uses accessible parking knows exactly where the accessible parking spots are and when they are parking in them. To claim differently in this case is laughable. The second thing is how they put the word violation in quotation marks (i.e. "violation") as if because of this "I really do have a handicap parking permit but didn't have it with me" thing it somehow made their violation not a real violation at all. Parking in an accessible spot without the proper identifying plate or placard is illegal, period. Third, I love how all that combined with the word repugnant and the "friendly reminder" comment offers the strong implication that the primary motivation for this person to get all of the above published was for them to try and make a claim that they were some sort of victim due to the harshness of the note left on their windshield. This person parked illegally, got busted, and now they're the one with the beef because the person who called them out wasn't polite enough in how they went about it? Give me a break.
Regardless, this guy's call out note has inspired me to possibly start leaving a few interestingly phrased notes on accessible parking violator's cars myself. If they leave even a fraction of the impact that this note left then maybe I will ultimately become responsible for making some very necessary, positive behavioral changes in regards to accessible parking abuse after all. I will be leaving the camel fleas and armpit infestations commentary aside, however.
Friday, September 25, 2009
Happy Birthday, Christopher Reeve
To do my small part as a birthday gift in honor of Christopher I wanted to mention this cool thing I discovered through the Reeve Foundation Twitter page: a free Reeve Foundation search toolbar. Apparently, every time you search with this toolbar the Reeve Foundation makes a few cents that goes towards their work "curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy." So if you don't already have a search toolbar (e.g. Google) and feel philanthropic, this is an easy way to donate. You can get it here.
All that being said, happy would-be 57th birthday Christopher, you are missed.