Living with Chronic Pain and Disability: “It’s Not Too Far Away, You Can Walk it”

girls high school basketball february 24 2918What follows is a letter I wrote  several days ago to the athletic director at Miller City High School and the Ohio High School Athletic Association (OHSAA):

February 27, 2018

Dear Deb,

Today, I attended the Fairview vs. Spencerville High School Tournament basketball game. I arrived at the venue seventy-five minutes before the doors opened. I asked the parking lot attendant to point me to the handicapped parking spaces nearest the gymnasium. He had me park in the handicapped spots in front of the main entrance. Indeed, this allowed me a short, easy path to my seat.

After the game, attendees were required to exit via the doors opposite of where I entered. When I realized that this path was going to take me away from where I was parked, I asked a man handling crowd control to tell me the best way to get to where I was parked. I told him exactly where I was parked. Instead of allowing me (or anyone else who parked in the front handicapped spaces) short, easy access to my parking space, he told me I had to exit the far side of the building. He then said, and I quote, “it’s not too far away, you can walk it.”

First, how did he know what “not to far away” was for me? There was a reason I parked where I did, and I expected to be able to return to my vehicle via the same path I entered the venue. Second, how did he know I could walk it? Did he have magic powers that enabled him to divine my handicap and physical abilities? Not wanting to press the matter further, I walked the long hallway to the far exit and exited the building. I then had to walk around the building to the front where my car was parked. Needless to say, I was exhausted by the time I reached my vehicle.

I am writing this letter to make you aware of this issue, asking that you please address my concerns with the relevant people. In the future, if people parking in handicapped spaces are expected to exit the far side of the building, then the parking spaces should be on that side. If the parking spaces remain at the front of building, then handicapped attendees parking in them should be able to exit the venue the same way they entered.

Thank you for taking the time to read my letter.

Bruce Gerencser
345 East Main Street
Ney, Ohio 43549

I received a prompt reply from Miller City’s athletic director. She assured me the matter would be looked into and changes made so handicapped people don’t face this or similar problems in the future. I appreciated Deb’s thoughtful reply. As of the writing of this post, I have not heard back from the OHSAA.

I am a professional photographer. During the winter months, I attend local high school basketball games. I take numerous photographs, sharing them with the players and their families on Facebook. On a few occasions, I have even made a few bucks off my work. I thoroughly enjoy watching high school sports (both boys’ and girls’), so attending the games and photographing them provides a brief respite for me as I struggle with chronic pain and disability.

This past season, I attended thirty or so games. It’s tournament time now, so opportunities to see local teams play are becoming fewer and fewer. I have grandchildren in the Tinora and Stryker school districts, and my oldest granddaughter plays for Stryker, so I try to attend as many Tinora and Stryker games as I can. I live in the Fairview school district, so I try to attend their games as well. During the latest holiday season, I donned my red stocking hat as I attended games, leading to countless adults calling me Santa Claus, and more than a few children wondering if I was the “real” Santa. (Seriously, if I was Santa Claus, would I be spending winters in Ohio? Not a chance!) Bit by bit, high school players I have photographed have struck up conversations with me. I have learned much about high schoolers through these conversations. Attending games gives me opportunities to get out of the house, even when I don’t want to. As people with chronic pain and illness will tell you, they have to battle the tendency to want to curl up in a corner and be left alone. In my case, I know it’s good for me to be out and about, even if it causes my pain levels to rise.

In 1997, I was diagnosed with Fibromyalgia. Since then, the list of my afflictions continues to grow. I daily battle unrelenting chronic pain from the top of my head to the bottom of my feet. Over the weekend, I was sitting in my recliner watching TV with lover, friend, and caretaker, AKA Polly. All of a sudden, my left foot felt like it had been repeatedly hit with a hammer. My toe, if you can imagine this, was pulled back to about the ten o’clock position. For thirty or so minutes my foot throbbed with pain. I tried to walk, but I couldn’t. Finally, the pain subsided, the tears dried, and I returned to watching TV. Just another day in the life of a chronic pain sufferer. You never know what you’ll face on any given day.

I also have osteoarthritis in my neck, hands, hips, shoulders, upper back, lower back, knees, and feet. In other words, Uncle Arthur is my constant companion. Throw in high blood pressure, diabetes, incontinence, and bowel problems . . . well, life is grand. It is what it is. I embrace every day as it comes, grateful that I am still among the living.

When I attend public events such as the aforementioned basketball game, I plan my day carefully. I always arrive at least an hour early. This allows me to get parking close to the entrance, and it helps me avoid dealing with rude and inconsiderate people as they push and shove their way towards their seats. Arriving early also allows me to find seating that accommodates my handicap. At basketball games, I prefer to sit on the first row at floor level. I haltingly walk with a cane, so it is best for all involved that I don’t attempt to walk up or down bleachers. I have fallen on more than a few occasions. I suspect if three-hundred-and-fifty-pound Bruce Gerencser landed on someone it would cause serious harm. I do all I can to avoid contact with others.

Seating, of course, is not my only concern. I also have to contend with access to concession stands and bathrooms. I try to go to the concession stand when there are not a lot of people in line. Bathrooms provide a unique and, at times, harrowing experience. Public school bathrooms are supposed to be ADA compliant, but older schools are not required to follow the code. On several occasions I have had to back into stalls, shut the door, and then turn around just be pee. Zeus help me if my bladder is screaming, Gotta go NOW! Accidents happen, and all I can do is hope that no one notices the dark wet stain on my blue jeans. And going #2, as my grandchildren say? I avoid that like the plague. Everything from small stalls, cheap single-ply toilet paper, and my suspenders coming loose, conspire to make taking a dump — another euphemism for defecation which my grandchildren use — a nightmare.

I write all this to give some context as to why someone saying to me, “It’s Not Too Far Away, You Can Walk it” is a big deal. The last thing I need is for someone to dismiss my disability — even if the person does so innocently — because he was in a hurry, or just following the “rules.” I have learned that the only way for disabled people to be heard is for them to shout loudly above the noise of the crowd. In my case, shouting loudly means writing letters, emails, or blog posts. By doing so, I hope that people will be educated about the difficulties the disabled face when attending public events.

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14 Comments

  1. BJW

    Thank you Bruce. I mainly have issues with stairs. I don’t go to school games as my sons never played and frankly, that’s not in my areas of interest. I was able to sit in the bleachers when my sons were still in school playing in their music group. Now? I would have to sit at the bottom. The meds I take add to the dizziness I have. I also have new pain in my knees.

    I actually feel that you are brave, Bruce. I have to hit a certain level of energy to be able to get out and about. I was scared this winter earlier when we had much more snow and ice. I finally just purchased some decent boots to throw on. I now avoid walking outside in the dark when the weather is inclement, as I could step on ice and fall.

    Honestly Bruce, people undoubtedly look at you and think of you as hale and hearty. A cane doesn’t really make a person look disabled. I used to have people be surprised all the time when they found out I had fibromyalgia. “You look so friendly and active, how can this be?” “Well, my personality is active but my body isn’t.”

    You know, there are places in the US that are friendlier for sick people. We do live in the conservative Midwest area, where even the population hubs tend to be conservative. I dropped the Toledo Blade as it had a definitely Trump lean. My local paper is much more even-handed and posts opinions from different side. But as a conservative area, the services for disabled people aren’t as good.

    Reply
  2. That Other Jean

    Thanks, Bruce, for shouting. Uncle Arthur and I are old acquaintances, too, since I have the hypermobility version of Ehlers-Danlos Syndrome–a collagen formation problem that leaves me loosely strung together, bringing on early-onset arthritis. Asthma, diabetes and occasional gout flare-ups make my life interesting in ways besides pain. There are days when I can barely move, much less walk down a long hallway.

    I use a cane, but otherwise don’t look particularly disabled. It’s easy for other people to ignore, and they do. Keep writing, please–people need to be educated about disabilities, even when they’re not completely obvious.

    Like you, I regularly curse the builders of commercial bathrooms. The ones I use are generally in stores and restaurants, but many have all the problems you mentioned. It’s obvious that the designers don’t have to use the stalls they create–tiny, cramped, spaces in which the stall door, which swings inward, touches the toilet. Gymnastics are required to sit, and the toilet paper most closely resembles water soluble fabric stabilizer.

    I’m willing to grant that nobody makes my life harder on purpose, and I’m grateful for every day. But I do wish that people–architects, administrators, designers, and just ordinary folks, would be more aware that not everybody is young and healthy. Good luck to you, and I’m glad you got through to someone who listened.

    Reply
    1. Bruce Gerencser (Post author)

      I just “love” the small stalls where the door swings in. The good news, I guess, is that you can’t fall in one of these stalls. They are too small to do so. 🙂

      Reply
      1. Emma

        I like it when ‘disabled toilets’ are too small to wheel a wheelchair into. ? Do the builders think they are building disabled toilets for dolls?

        Reply
    2. Emma

      Several members of my extended family have Marfan syndrome, and three close friends have Ehlers-Danlos syndrome. They either walk with canes, or use wheelchairs – and they get an awful lot of ‘you’re too young to be in a wheelchair, you look perfectly healthy’.

      The doctors tried to throw ‘graded exercise’ at almost all of them, and it did fuck all to make them feel better. Opioids are the only thing that helps, particularly with injuries. Fortunately, our Government is not as paranoid as America’s yet.

      Anyone who tells my friends and family to suck it up and exercise gets a nice lecture about connective tissue disorders and tendon injuries. They get the same if they pry into the details of my chronic pain. Hopefully it makes them think.

      Reply
  3. Justine Valinotti

    That attendant who told you “It’s not too far” was being mean, presumptuous or simply ignorant. I hope it’s the latter, because at least he can then be educated.

    I’m sorry you experienced that, Bruce. We never really know what another person’s burdens are, even if they manifest themselves visibly. That is the reason to treat people, whether disabled or not, with dignity, compassion and humility.

    Reply
    1. Bruce Gerencser (Post author)

      He was busy, to he sure, and I want to give him the benefit of the doubt, but his words were hurtful and judgmental. He could have said, here, let me move this rope so you can go to your car. Instead, he herded me like a cow to its appointed pen.

      Reply
  4. Suzanne

    Get the ADA folks involved. I had to do that with a live music and arts venue locally when the box office agreed to allow me to sit isolated in the balcony but the usher refused. I was sick for two days after having to sit in the main auditorium with everyone’s colognes and smoke smell sent me to the ER. The Kennedy Center and other venues would accommodate me but not this place until I filed an ADA complaint.

    Reply
  5. Troy

    Instead of accepting that answer you should have told him no I can’t, I need to enter through the exit I came in at. Writing a letter the next day won’t do you any good. Assertiveness is hard, we humans have a huge propensity to follow leaders, even when they are wrong.
    I remember my Grandmother went to a local establishment as a member of the “Purple hats”. They catered more to the sports bar/motorcycle crowd. The handicapped spots were also marked “Motorcycles ONLY”. So she didn’t park in the handicapped spot and it just about killed her. I regret that I didn’t make a fuss over it after I heard about it.

    Reply
    1. Bruce Gerencser (Post author)

      I agree with you, but that’s not the kind of person I am. I tend to endure and bitch later. 🙂 I think my letter was helpful because the woman genuinely didn’t know this was happening. Her mother has MS, so she is sympathetic to people with disabilities.

      Reply
      1. Troy

        After I wrote that comment I was thinking you should have still sent the later. I think feedback is a great way to improve things. Nowadays if you send a snail mail letter with envelope and stamp it is very noticeable and has a lot more impact than in the past.

        Reply
  6. ObstacleChick

    Bruce, it is unfortunate that you have to bring these things to people’s attention, but many if not most people are insensitive to the pain of others. The ADA has made great strides in increasing accessability for more people, but of course, more needs to be done. And some parts of the country are more progressive than others.

    As for bathroom stalls? I’m a small person and struggle to get into and out of some bathroom stalls. It’s ridiculous. I can’t imagine how larger people – and by “larger” I mean someone who is bigger than me which is not big at all – can manage to get into and out of the stall without falling or stepping into the toilet. Some places are just ridiculous.

    It sounds like you go to quite a lot of trouble to go out and see sporting events. I hope your grandchildren appreciate having their grandfather at their games! I’m sure they enjoy having you there, even if they don’t understand the great effort on your part to be there.

    Reply
  7. Matilda

    I was involved in a focus group making recommendations to a committee which was feeding back to Parliament (UK) about new accessiblity laws. I recall a man in a wheelchair saying he had asked about access to a church and was told ‘just come, there are steps but some strong guys from the congregation can lift you in your chair up them’ He objected of course so they showed him a backdoor on the level, but once inside, his chair wouldn’t go through a gap in the front pews so he’d be stranded on his own at the front and felt he’d be on display, our trophy token disabled member. All he wanted was, rightly and naturally, equal treatment. The Uk has laws that all public spaces must have a disabled toilet and disabled access. The few exceptions include the places like the victorian town I lived in where historic shopfronts had no way of incorporating a ramp, they display a sign to say so – and the London Tube has some stations deep underground they cannot adapt, but overall, it’s illegal not to have access for all in public places (and that technically includes hearing loops for the deaf, large print materials where necessary for the visually impaired etc.) Keep fighting the good fight Bruce!

    Reply
  8. Gimpi123

    I totally sympathize. I had a bad day yesterday, too much walking, too much reaching for things out of my 5′ grasp, too much pushing, just too much for a person with rheumatoid arthritis to deal with. I’ve also been told, “It’s not too far/hard/high/heavy,” with the attending judgement that I must be lazy or something. No fun…

    I hope it gets better. I also hope the managers of the facilities in question learn something, and pass it on down to the front-line people.

    Reply

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