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

I took the picture below at a Byerly's, which is the grocery store that I shop at in Minneapolis the most often. With the mostly meager bottom line that I’ve carried through my four years of law school, plus the handful of years since, I probably shouldn’t have continued to shop there with such regularity because it’s a grocery chain that caters to a wealthier clientele on the whole, and has higher prices on average as a result. But I’ve continued to do so nonetheless for three main reasons: 1) I workout in the neighborhood every Friday afternoon so it’s convenient, 2) they bag my groceries for me, and 3) I can either drive up to retrieve them or they carry them out to my van for me if I can't handle them myself. It's a huge selling point for me.

What’s the big deal with the latter two points some may now be asking themselves. Well you don’t live in the greater Minneapolis area, where for some reason hardly any prominent grocery store chains bag shopper’s groceries for them. In fact, it’s one of three cultural observations that immediately struck me upon moving to the cities: 1) the vast majority of common grocery stores don’t bag groceries, 2) no grocery stores have liquor stores attached to them, and 3) liquor stores aren’t even open on Sundays. I grew up my whole life in Wisconsin with grocery stores having hired baggers on hand for every checkout aisle, so I found the fact that they don’t do the same thing in Minneapolis very out of place, not to mention unfortunate for me personally since it can be quite difficult for me to bag all my goods by myself. And not being able to buy a case of full strength beer on football Sundays over here is just plain mind-blowingly asinine to me; I mean the state of Wisconsin would shut down if that was the case over there. That’s not even a theory, that’s a true fact. Wisconsinites come strong in that department.

Anyway, two things immediately stick out to me when I witness a parking scenario like this. First, this person is parked crooked across the yellow access stripes. As I’ve mentioned before, those striped zones are vital for someone like me who needs extra parking room for my ramp and wheelchair. I have what I think is a pretty strong theory that drivers who don’t have true, permanent physical disabilities are the primary culprits for parking crooked like that. Those of us that do live with more significant disabilities always park straight, even if we're in a rush, because we respect the fact that other people might need to use those striped zones for their own access.

Second, the car is a Lexus. I’ll admit right off the bat that people with all kinds of disabilities drive all styles of vehicles. But that notwithstanding, whenever I see a luxury vehicle parked in a handicapped parking space, let alone when it’s both a luxury car and parked crooked, it always raises an eyebrow. Moreover, in all of my vast accessible parking experiences spanning thirteen years I have yet to see a person getting in or out of their luxury vehicle who looked like they needed to park in an accessible space. When I see that I always picture a doctor doing a favor for a golf country club buddy so they can park close everywhere and not get their nice car scratched.

A quick relatable anecdote: About six months after my accident my parents were invited to attend the Governor’s Christmas party down in Madison, WI. At that dinner my parents were seated next to some wealthy desperate housewife who was talking openly about how she had her doctor friend write her a script for a handicapped parking hangtag, and how great it was to be able to always have an open parking spot when she went shopping. My parents didn’t say anything at the time so as not to potentially make a scene with so many of my dad’s Secretary Cabinet colleagues around, but my dad said that my mom was pretty upset by it on the drive home. Granted, it was still a highly emotional transitional time for my family, but on the whole that was a pretty classless move by that lady to be so ignorantly boastful, even if she couldn't have reasonable predicted that someone within earshot had a disability connection. And unfortunately that's not an isolated incident in that regard.

I had a similar experience my last semester of college when I was doing an internship at a law firm. At the spring firm picnic I started to overhear a handful of guys, including one of the senior most partners, standing about eight feet away from me talking up the great advantages of getting to use handicapped parking whenever they got the chance (i.e. through friends, wives, relatives, etc.). I didn’t say anything at the time because I was the low man on the totem pole and had it in the back of my mind somewhere that if I got after them and caused any embarrassment (even if it was due) that I would blow my chances of working there someday, if I ever applied for an attorney position after law school. But I always regretted it, even if one of the lawyer’s names was placed most prominently on the firm’s letterhead. If I could do it over again I probably would have said, “Do you guys mind not talking so loud about how great handicapped parking is in front of the guy in the wheelchair?"

But all in all the point of this picture in particular is that in my world a person parking crooked in a handicapped spot + driving a luxury vehicle usually equals a shady disability situation + I have to park somewhere else.

Tinkering

I'm not sure how closely that people are following this thing, but regardless I wanted to make brief mention of a few changes I just made. First, I added a picture to my most recent Observations from Camp Randall post. When I went to the Iowa game last weekend (BTW damn I hate losing to Iowa...) I nabbed a shot of that sign by the elevator that in part says 'reserved for patrons with disabilities' that I previously referenced.

Second, I made some changes to my most recent post about my mom putting her plants in my ramp hallway at my parent's house because I decided that it did not turn out the way that I wanted it to originally. Incidentally, this is why my autobiography might never see the light of day because I keep going over stuff I've already written and making sizeable changes. Especially the stuff I wrote pre-law school when my writing was a little bit less sophisticated. Yikes...

Anyway, the whole point of that post was to be a playful departure from the other crappy lack of access issues I've already posted about, as well as those to come, by bringing to light a funny "access" issue at home. My mom's a super special sweet lady and the greatest mom a guy could ever have, she thinks of me and my sister first for everything, especially when it comes to me and issues of my accommodation. Truth be told, the whole annual putting the plants in my ramp hallway thing has become a running joke between me and my parents, so I just wanted to make that crystal clear in case people took my post about her plants and my ramp for anything else. They may be a little poofier and harder to roll around than in the past, but it's no big deal overall. In fact, I am looking forward to seeing if my niece and nephew have their own mini 'Where the Wild Things Are' moments throughout the winter. I can picture the "No buddy, the plants don't need to be watered again" or "No no guys, it's too cold to play in the tunnel" back and forth unfolding already.

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

Oddly enough, this week’s pictures come from none other than my own parent’s home in Eau Claire. What you’re looking at specifically (further below) is the ramp hallway that goes from my room to the garage, at some point dubbed “the tunnel.” After my diving accident my parents added on a wing to our house that became my new, fully accessible bedroom, which included a private bathroom, a small office area, my own accessible doorway to our back deck, and that ramp.

Since at the time of my accident my room was in the basement, gaining near full accessibility downstairs would have meant cutting some nasty hole into the upper level floor somewhere to install an elevator, putting in much less aesthetically pleasing, dense industrial carpet that’s easy to roll over, and completely gutting parts of my room, our storeroom, and the bathroom to make it all work. In retrospect we clearly made the right decision.

The ramp itself runs the length of the backside of our garage and comes out into a separate garage that was also added on for my near-exclusive use. Clearly, it all made my ability to come and go pretty seamless. Not to mention private and quiet from my parent’s ears on nights that I came home late.

Between 2003, when I moved out of the house to start law school, and now the ramp has taken on bit of a new life of its own in three respects. First, in December of 2003 my parents got two cats and they love spending time out there. It gives them about a half dozen windows at their height to look out into the side yard and a warm sunny place to nap. It’s not an uncommon sight to see them clawing at the door to be let out there.

Second, it’s becoming an intriguing playroom for my niece and nephew, 2.5 and 1.5 years old, respectively. They just love simply running up and down the ramp for two reasons that I can figure: 1) little kids just love ramps for some reason, they go nuts for my van ramp too, and 2) the ramp was built on a triangular box and the floor is hollow under the plywood, so every step they take sort of makes a hollow thud noise they love hearing. And starting this past winter my nephew goes nuts for watering the plants out there. I assume that my niece will see that and want to join in soon as well. Which leads me to...

Third, and coming back around to the point, over the last three winters my mom has stashed a lot of her outside potted plants in there. My room and ramp are heated with thermal heating via hot water coils in the floor and the ramp itself is kept at 45 degrees throughout the winter, so between the in-floor heat and outside light that beams through the windows my mom treats it as her de facto winter greenhouse for about four months.

Once she puts her plants in there it cuts the open ramp space down by about third. Technically I think I only need about half the ramp space so that's fine, but it plays tricks with my mind because I don't want to damage the plants. That said, I make my ingress and egress a little bit slower because I want to be extra conscious of not driving over leaves and vines while also not over compensating by running into the wall. I usually rake the back of one of my hands or stick out my elbows like a rudder to run along the wall as I go so I know not to move over any farther than is necessary.

But this year my mom must have been hitting the Miracle Gro extra hard because all the plants are especially extra poofy. I still have enough room on the whole but I’m afraid that I might do some pretty decent damage to her precious plants by the time the ground freeze period is over next April, which would make me feel bad. “Just smash them down, who cares?” she told me Friday night when I paused after I turned the corner and saw that I was dealing with a much wilder kingdom than I had in the past. Easier said than done. I tried that same thing last year and my front wheels flipped over a plant pot in front of me and I got stuck for about ten minutes. I couldn’t back up because one of our cats wouldn’t move and I had a basket on my lap so I couldn’t bend down and smack the plant aside. I could have just driven over it I suppose but I try to defer to them as much as I can since I think some of those things predate me.

Did I mention that the tunnel is so well insulated because of residential disability fireproofing laws that it’s virtually soundproof? It’s a good thing when I’ve come home from the bars, etc. with some rowdy friends, not so much when you’re trying to yell for help. After wondering where I went my mom finally emerged and said, “What are you doing?” I said, “I tipped over one of the plants and it blocked my path.”

I love my mom with all my heart and it's only in good clean fun that I call her out on my blog a little. Truth is that it's only a little annoying, and even mostly creatively cute that she uses that space for the plants. After all, I'm not there too much in the winter anyway. And she always goes out of her way to move plants around so that I can get in and out as easily as possible. My personal accessibility has always been at the forefront of my parent's thinking. I just thought this would be a fun departure from my other documented access issues.

For the record, she wanted me to very clearly point out that she’s a plant lover and doesn’t want plants she’s had for years to die in the cold, and also that she deserves a pass because she’s doing her small part to oxygenate the planet. So because it is my mom let's just file this post much more under interesting, and maybe a little bit annoying, but definitely not aggravating by any means whatsoever.

So here’s to another winter of somewhat begrudgingly sharing my tunnel ramp with a crap load of plants, extra hallway oxygenation, and that robust, closed space, clingy earthy stink that almost makes you want to wash your hands and face by the time you’ve run the plant gauntlet.

RIP Christopher Reeve: My Personal Encounter with the Man Himself

Today marks the five year anniversary of Christopher Reeve's passing, and I couldn’t let it pass by me without sharing a few words about that. In short, his death was a highly unfortunate event at the time, and its saddening impact remains so to this day. I still remember that day quite vividly in fact. When I first caught word that he had died everything in my life stopped briefly. I was a month and a half into my second year of law school, and needless to say my studies took a dive for the rest of the day. In its stead I hit the web and read everything about his passing that I could. That followed with a period of extended quiet reflection. I found the way he died (suffering a cardiac arrest that was preceded by a skin pressure wound that caused a systemic infection) very sobering because it’s something that’s an issue for all people with SCI. Thankfully pressure sores and skin breakdowns have never been a problem with me – presumably a result of my being careful with all the body parts I can’t feel and my surprisingly tough skin – but what put things into perspective was the realization about how things could go south pretty drastically if it were to ever occur.

Once the initial shock wore off my thoughts on the matter went into two different directions. First, and I briefly echoed this in my Derrick Thomas post, I was deeply saddened to lose an “SCI brother.” Living with paralysis stemming from a spinal cord injury has become a pretty common disability type these days but that group as a whole is still quite a minority as compared to everyday, able-bodied society as a whole. So to that regard I’ve always felt like I’ve shared membership in a club of sorts to others who live with SCI. Thus I always felt a fairly strong connection to Christopher Reeve. And not just that, but he was the president and CEO of our unique club.

That said, secondly, and maybe selfishly, my thoughts then immediately went to fear for the future of SCI research and fundraising. People in my position, who have lived this lifestyle for years and years, are not just going to wake up on some given morning to discover that all of our physical faculties have returned on their own. We rely quite exclusively on the discovery of the elusive cure for paralysis to get most, and possibly all of it back. With Reeve’s passing, the discovery of said cure and other related things that improve the lives of people living with SCI suddenly felt iffy because our greatest champion for the cause had fallen. Reeve was almost hands down the face of our disability, thanks in large part to his popular global icon status as SUPERMAN. Without his unfortunate accident, and the publicity that ensued, SCI issues would not have been thrust into the public sphere to the immediate and vast nature that they did. Moreover, his journey in the aftermath, his positive attitude, and his decree that it was not a matter of if, but when he realized his dream of walking again brought a ton of awareness and activism about SCI in a short period of time that I’m guessing would not equal where we would be fourteen years later today without him.

Thus right away I was highly concerned that all of the great progress that was being made in that area while he was still alive would slow down significantly after his death, or worse: stall out completely. But the Christopher & Dana Reeve Foundation has continued to do great things in his wake, and with Marc Buoniconti being on the cover of Sports Illustrated a few months ago representing The Miami Project to Cure Paralysis and all of their great work, I think that the fight for a cure for paralysis has been able to maintain itself as an important public issue that requires much more progress to fulfill its ultimate goal.

My own personal account of Christopher Reeve dates back to the fall of 1996 when I met him briefly in Denver, CO. Somewhere around early November Reeve was in Denver for a major public speaking engagement at the downtown convention center. At the time I was still out in Denver for an eight week extensive inpatient spinal cord injury rehab stint at Craig Hospital, arguably the finest facility in the country (if not the world) for such a thing. While he was in town he stayed in a room about six doors down from mine in the East Building at Craig, which is essentially the residence wing. All the rooms in that part of the facility were set up like single living accessible apartments with a private bathroom, a mini fridge, an office-type area, and a living room area with a pullout couch bed for family members to sleep on. Most of the Craig patients that roomed in the residence side of the facility were in their final transition period before getting discharged from rehab, which for me meant that at the time I was in my last two to three weeks before going back home.

It was no surprise that Reeve stayed at Craig while he was in town. First of all, the room where he stayed was easily the most accessible lodging in the city, not to mention completely private from the public. Second, the word on the street leading up to his visit was that immediately after his injury Reeve wanted to come out to Denver to do his SCI rehab at Craig, because of the great national reputation it has, but they didn’t have any patient openings to accommodate him at the time. I’m not sure if that’s actually true but if it is then in a roundabout way he finally got his chance to stay there and see the facility first-hand.

The morning after he arrived he held a city-wide press conference in the media room at Craig (fun fact: I used to watch my Packer games on their 72 inch big screen TV). I don’t remember if I missed the presser because I wasn’t up yet or because I was in the middle of my morning therapy sessions, but my dad went down and took some pictures (I’ll have to scan and post later). Sometime afterwards my dad came back to my room and mentioned that a bunch of other patients had congregated a few doors down from Reeve’s if I wanted to go try and meet the man himself. I’ve never been one to resort to rubbernecking but considering I would probably never have such an opportunity ever again I ventured down the hall to join the other half dozen or so nonetheless.

After a brief moment Reeve appeared from his room and came down to us. He used a sip and puff mechanism to drive his wheelchair and as soon as he stopped and moved his mouth away from the sip/puff thing he said “Hey, everybody” in a quiet, friendly voice. The group responded with a collective ‘hey’ back. Then he asked what we were doing there at Craig, kind of focusing his attention on one lady in particular to start things off. She was a paraplegic who was discharged less than two weeks after I arrived at Craig. If my memory serves it was her second time at Craig due to a re-injury. I remember also that she was very loud, brash, and kind of speedy aggressive with her wheelchair, but not necessarily in a negative way. She belonged to a click of sorts with a handful of other patients who had been in rehab together for quite the same amount of time. Whenever I saw them hanging out in the halls I felt like a high school freshman steering clear of the cool upper classmen group all over again. It should be noted that in true circle of life fashion (my nephew’s really been into the LION KING lately so I had to throw in that reference) about four weeks after she was gone I found myself involved with a similar click of my own. And in my rehab discharge roundtable with my parents and rehab team my physical therapist (an ex-Navy SEAL of 26 years) mentioned that a handful of his other rehab patients had started requesting a fast manual wheelchair like mine, assuming that the chair was the reason for the speed I was exhibiting, not me making it go fast.

Anyway, when he essentially asked her what she was there for she very quickly replied, “To see you.” Then he said, “Well are you here for therapy as well?” And then she said back, “Nope, I just came to see you.” I don’t recall the details of any other specific conversation exchanges he had with the group but I do remember that he didn’t stay and chat with us for long. I remember thinking at the time, and still feel the same to this day, that it was unfortunate that of any person in the group that he opened up his brief friendly dialogue with it was with the one person who was no longer affiliated with the facility and had only visited that day just to get a close up look at him.

My immediate impression of the whole exchange at the time, and an opinion I still strongly share to this day, is that I think he just wanted to shoot the breeze with us about our therapies and our thoughts on getting a chance to do rehab at such a fine facility. Kind of a “we’ve all gone through this” note comparison session. That theory carries extra weight if it’s in fact true that his admission request was turned away. So as far as that goes, I always felt like he just wanted to pick our brains about getting to do something that he never got the chance to do. That’s why I think it’s too bad that most of his native chit chat time was taken up with someone who couldn’t read between the lines. I feel like at least she could have told him that she was a former patient and not just a crazy fan. Had he engaged me instead I would have said that I was a c-7 quad, had a diving accident, was from Wisconsin, came there for more aggressive therapy, it was hard as hell to be away from my family and friends but it was a necessary move that I didn’t regret, talked up the quality of the joint, and asked where he rehabbed and what his thoughts were about it. I guess I should have raised my hand or something.

That afternoon I got the chance to go to the convention center and see him speak. In fact, most of the hospital staff and patients got the afternoon off from therapy to do so as well. For me it was a very liberating roundtrip because unlike most everyone else who got bused downtown, I got a separate day pass to go by myself with my parents. One of the smart things my parents did was have our Chevy Blazer driven out to Denver so they had a vehicle to get around. It was only a small handful of times that I got to leave completely untethered from the facility. So it was kind of a big deal at the time to be able to drive down there by ourselves.

Because we were on our own schedule, we got to head downtown after most everyone else had already left. As fate had it, on our way to the elevator we crossed paths with Reeve and his crew of people, who were also getting ready to load up on the elevator. They were right by the elevator doors so we waited politely behind this decorative wall divider thing so that they could get on the elevator first. But someone in his entourage saw us and and waived us past because they weren’t quite ready. As I was just about to break into view of him I heard him say “A little more to the right” which based on my own experience I assumed meant that their holdup was because he needed a body adjustment in his chair. Thus even though I passed by him within less than six feet between us I didn’t look over in his direction to respect his privacy. In retrospect I probably should have glanced over and given him a quick hello or a friendly nod, but at the time I felt pretty strongly about keeping the blinders on because I knew how frustrating it was to have people stare at you while you were getting some private adjustment.

So my one close encounter with Christopher Reeve didn’t quite have the bang for the buck, and was more like a fly by, but at the time it was a really great moment for me and my parents. And I always like getting the chance to share the story. But overall, the thing that I will always take away from that day and that chance meeting is that when you strip it all away – the Superman thing, the social popularity, the global icon status, the face of our disability – he was just one of us: a guy who sustained an unfortunate, life altering spinal cord injury, became a quadriplegic, and was just trying to continue on with his life as best as he could. And yes maybe that included waiving a few people onto the elevator ahead of him because he needed help getting a few small adjustments to make him feel more comfortable and presentable.

Keeping with the spirit of this anniversary, here’s a couple of related links I wanted to share. The first is an article written by the CEO of the Christopher & Dane Reeve Foundation about how the best way to honor his legacy is to find a cure for paralysis. Clearly, I concur with that notion. The second is the Reeve Foundation forum page where people have been posting their thoughts about the five year anniversary of Reeve’s passing and sharing stories about how he touched their lives.

So in closing I say rest in peace, good sir. It was great getting the brief chance to meet you once upon a time in Denver.

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

I'm starting a new blog segment so titled above. Being a wheelchair user I encounter plenty of annoying, aggravating, and interesting access issues as I venture out in public. So I thought that I would start being more cognizant about recording them with my phone camera, etc. so that I can share them here. In doing so I thought it might enlighten people about these sometimes hidden, yet often significant obstacles, and hopefully people reading this might even start making some changes accordingly.

What I will no doubt post about the most are my frequent, frustrating encounters with handicapped/accessible parking issues. (I'll use those terms interchangeably because handicapped parking is the most commonly referred to terminology but accessible parking is becoming much more pc). To give people the quick skinny, I drive from my wheelchair in a minivan equipped with a fold out ramp. To get in and out comfortably I need about eight total feet of free space on my passenger side to have enough room for both my chair and my extended ramp. Therefore, using accessible parking spaces with a fairly large striped striped area adjacent to them is an absolute must for me to freely go out and about.

To kick things off I thought that I would post a few pictures I took during a recent trip to a mall to get a haircut. As you can see just below, the large SUV across the aisle from my van is parked crooked. Specifically, it is parked crooked across the yellow striped zone next to it. Now look at my van with my ramp fully extended onto the striped zone and then look back at how the SUV is parked. From my perspective this presents two significant access issues: 1) I couldn't park in the spot on the SUV's driver's side because I wouldn't have enough room to get out with my ramp, and 2) if that person parked crooked in that spot after I was already parked I would not be able to get back into my van for the same reason. Because getting someone ticketed and towed is far from expedient, in the vast majority of cases that I have had the latter occur I have typically had no choice but to sit and wait for the other driver to leave. That is also the primary reason why I don't venture out to busy parking lots in the cold weather months. This is a great first picture to demonstrate the aggravating parking issue that I encounter the most frequently. This theme will be revisited again later on.

Handicapped parking abuse is such a heated passion area of mine that when I was in law school I wrote a 55 page research paper on handicapped parking laws for my independent research class. The course requirement was 25 pages but I got caught up in doing it the way I wanted and making it the most complete project that I could. One of my long term goals in life is to somehow get the whole handicapped parking system much more under control and curb the rampant abuse. At some point I will post my own personal "Handicapped Parking Manifesto" that I've been kicking around in my head for a number of years.

But what should be gleaned from pictures like these is that when people don't park within the lines and/or park crooked onto the striped zones next to accessible parking spaces it can make them very difficult to use at the least, highly inaccessible and unusable at most. Not to mention a total day ruiner. Those striped zones are absolutely necessary for proper access for people like me who use wheelchairs and they should be left clear of all barriers all the time, even if we're not always seen using them.