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.

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 café 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.

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.

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

This is the fanciest handicapped parking sign that I’ve ever seen.

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.

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.

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.

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.

New EasyStand Blog Guest Post: Spazzing Out

My new guest post for the EasyStand Blog went live today. It covers managing muscle spasms a la spinal cord injury. So please check out: Spazzing Out.

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.)

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.