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Student’s invisible illness garners online attention

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Harley Skorpenske, an OSU student diagnosed with lupus, found a note affixed to her windshield after parking in a handicapped space last Thursday. Credit: Courtesy of Harley Skorpenske

Ohio State student Harley Skorpenske walked out to the CVS parking lot on Thursday morning to see a stranger placing a note on her car.

After quickly making eye contact with Skorpenske and exchanging a friendly smile, the stranger shuffled away as she approached her car. At first, Skorpenske said she assumed the note was a club invitation or a coupon, but was surprised with the content of the note, which stated: “You should be ashamed!! When you take a handicap spot an actual disabled person suffers. You were not raised as you should have been.”

Skorpenske, a third-year in evolution, ecology, and organismal biology, was diagnosed with lupus in 2012, which means her immune system consistently attacks her healthy tissues, organs and joints.

Lupus is a chronic autoimmune disease that causes the body’s autoantibodies to attack and destroy healthy tissue. The symptoms of the disease fluctuate, which can lead to an individual experiencing periods of “flares” and “remissions,” according to the Lupus Foundation of America’s website.

For the past four years, Skorpenske said her body has been consumed by rashes and constant pain. During her sophomore year, lupus ate away at the nerve that connects her ear to her brain, causing her permanent hearing damage.

Because of all of the damage caused by lupus, Skorpenske said she regularly visits seven doctors and a physical therapist and takes 16 pills each day. She also has to self-administer a shot of chemo every week.

But Skorpenske said the note from the stranger did not ruin her day.

“It’s just as simple as getting stuck in traffic or it’s raining,” she said.

While the note didn’t make her upset, it did anger Corinna Skorpenske, Harley’s mother.

“She actually has a disability, and I just wanted the person to understand that,” Corinna Skorpenske said. “That’s why she had a handicap parking sticker; it wasn’t just somebody who was borrowing someone else’s car and parked there.”

According to the Lupus Foundation of America, there are at least 1.5 million people in the United States who are diagnosed with lupus.

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Harley Skorpenske. Credit: Judy Won / Lantern Reporter

Lupus is a considered an “invisible illness,” a term that’s commonly used in the medical world to describe those who suffer from chronic diseases and appear to be healthy when they actually aren’t.

But Harley Skorpenske is not the only student on campus who suffers from an invisible illness.

“There are currently 1,850 students registered as having disabilities in the Office of Student Life Disability Services. Of that number, 88 percent have hidden or invisible disabilities that include, but are not limited to learning, attention deficit disorders, medical and mental health conditions,” said Lois Harris, the director of the Office of Student Life Disability Services, in an email.

Harley Skorpenske said the parking lot incident is something that’s common in the invisible illness community.

“I think it’s really difficult to conceptualize that somebody can have such a severe disability that they can’t walk that distance,” she said. “I try to be understanding of people that don’t have someone in their life with an invisible disability. I really want to protect what she (the stranger in CVS parking lot) did because I think what she did had great intentions. I applaud her for advocating for the people that have wheelchairs or crutches that also need those spots.”

But Corinna Skorpenske said she wished she could have confronted the bystander and talked to her. After finding words to describe her anger, Corinna Skorpenske channeled that anger into a post on Facebook.

“I decided to use this opportunity to make it a positive rather than a negative,” Corinna Skorpenske said.

In a post titled “To the person who left this on my daughter’s car,” Corinna Skorpenske said her daughter had been diagnosed with lupus when she was 16 years old, and explained the struggles her daughter has endured. She also shared her daughter’s collegiate journey with lupus, starting chemotherapy her freshman year, beginning to lose her hearing her sophomore year and having her lung collapse three times during her junior year, causing her to take time off from school.

The message was posted online on April 9 and had more than 184,000 shares as of Wednesday night. Both Harley and Corinne Skorpenske’s Facebook walls have been filled with support from the invisible illness community and from those who appreciated a mother standing up for her daughter.

Harley Skorpenske said she is proud of her mother for using social media to share her message.

“I think parents are really protective and she had the chance to put something really mean and equally attacking on Facebook,” Harley Skorpenske said. “I think she was able to make it an opportunity to teach someone something they didn’t know.”

Corinna Skorpenske said she is just as proud of her daughter and how she has attempted to raise awareness for her disease.

“She’s very passionate about bringing awareness to these ghost diseases,” Corinna Skorpenske said. “I kind of think that if she has this disability, then there’s no excuse for any of us.”

40 comments

  1. Corinna Skorpenske

    What a wonderful article Won did a great job

  2. Too many people today use handicap parking that don’t need to, even many of those who legally have a placard. Handicap parking was designed to provide access to goods and services for those who were prevented from doing so because of barriers. And by barriers I’m referring to physical barriers like curbs, narrow spaces, steep slopes, stairs, heavy doors, etc.

    Many people believe handicap parking spaces must be located closest to an entrance. This is not true, by law they are required to be located nearest an accessible route. Which means a physical barrier free route. The feature provide by handicap parking is this barrier free route, not the distance to an entrance.

    Distance to an entrance is not a vital component of handicap parking. The reason being is distance can easily be overcome by using an appropriate mobility aid like canes, crutches, walkers, scooters, wheelchairs, etc. But these devices require a barrier free route to be used safely and effectively. Thus the reason an accessible route is the main feature of handicap parking.

    Too many people today with placards use handicap parking only for the convenience of being closer. They do not use, don’t care about, and aren’t even aware of the accessible route feature. This unawareness is problematic for the minority of people with disabilities (whom disabled parking was designed for) that require and rely on using the accessible route feature of handicap parking.

    Ohio state disabled parking eligibility requirements can be found here: http://publicsafety.ohio.gov/links/bmv4826.pdf The vast majority of people with “invisible illnesses” that don’t require a mobility aid do not and would not qualify for the first criteria listed: “Cannot walk two hundred feet
    without stopping to rest.”. In fact many can and do consistently walk much farther, many walking 1000’s of feet.

  3. This was a very well written article and a very important article to raise awareness about those facing invisible illnesses. It is great that Harley was willing to share her story and that the writer was able to capture such a sensitive topic in a very well written piece.

  4. Sarah makes some interesting and detailed points. I can’t speak to Ms. Skorpenske’s condition or whether she is capable of walking the required 200 feet. I do remember my grandfather, who required two canes (only because he was a tad too prideful to go to a walker) being confronted over the use of his handicapped parking permit. Although I was one of many that shared her Mother’s post, but I’m sure there are many doctors that are quick to sign off on these in situations where they should not. Obviously, there are people working the system, even if Ms. Skorpenske is not one of them.

    Frankly, I think the whole system could use a little reworking. I agree that they system is needed, but it also seems to be ridiculous to go to a Lowe’s HIW and see half a dozen or more spaces (more if you count all the van accessible slots) that are nearly always empty. I’m sure this is because there is some mandated formula based on a retailer’s square footage rather than any actual study of the needs, historic usage, type of retail establishment (a pharmacy would logically need more than a hardware store). Ah well, it’s not like the rest of us able bodied fat assess couldn’t use a little extra exercise lest we find our selves needing mobility assistance.

    But, my point is it’s not surprising that, when such a mandated surplus of handicapped spaces exists, certain people will become tempted to game the system.

    Even if there is no tweaking of the rules and regulations, there is clearly some need for additional education on the rules, including for the physicians who give the permits out.

  5. I actually also have lupus. I don’t have a placard but I’d like to tell you that when I personally experience a ‘flare’ I can’t walk 200 ft at these times I typically don’t leave my house. It has been so bad at times that I needed my fiances help getting up off the couch, getting out of our car and even getting dressed. One can’t understand the pain and weakness this disease causes unless you have it, you can imagine it but you’ll never actually feel it, therefore you will never know.

  6. As someone who suffers (and is still suffering) from an “invisible illness”, this is something I am unfortunately very familiar with. I have Advanced Lyme Disease and have been very ill for more than 10 years. I graduated from OSU in Spring 2013, but I had to work about 20x as hard as everyone else. When it’s not apparent on your body everyone in the elevator gives you dirty looks for needing help to the 2nd floor. It’s the same situation when it comes to a young, healthy-looking 22 year old who also has a handicapped permit. I have had at least 4 much older strangers either confront me in the parking lot or leave notes on my windshield. Each time is just as painful and usually results in me leaving the store in tears. Just because you don’t see me taking my 24 different supplements, 13 different pharmaceutical medicines, IV medication, or the central line port in my chest– I am seen as the villain of the handicapped parking. My heart goes out to you Harley Skorpenske, living with an invisible illness can be torture when no one knows the truth. But it changed my outlook on life for the better and it sounds like your perspective has changed positively, too. And I’m pretty sure our moms would get along 🙂 Keep fighting and know you’re not alone girl!

  7. Ryley (Harley's Best Friend)

    Harley is my best friend. I have known her since before her symptoms began. I have seen Harley go from being the captain (and best flyer) of our cheerleading squad to having to give up her bedroom because she was unable to ascend the stairs, and vomit from the pain of walking 20 feet from one class to the next, yet she still didn’t look sick. That was, until she began to lose her hair and had a massive facial rash (which has since gone away.) I have seen her go into remission and be somewhat back to normal, and then go into another flare up and be in the hospital for 3 weeks with three separate collapsed lungs. This ritual of flare and remission has happened more times than I can count, and when she is in remission she never uses her placard. She often doesn’t use the placard even when she is having a flare because it is somewhat embarrassing for a once healthy 20-year-old to admit she can’t walk the required 200 feet. I am extremely proud of her for coming forward with her story. For anyone interested here is an amazing read on what it is like to have a disease like Harley’s. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
    Please don’t judge a book by it’s cover.

  8. I see comments that reinforce what the article is talking about. I have a permanent hip injury that resulted in being issued a permanent placard. The biggest issue I have besides accessing buildings is having to stand in line for even a short amount of time. I can be having a “good” day and have to wait behind even one person at the pharmacy and the day is ruined by excruciating pain. Imagine what it would feel like to lose all feeling in your leg and fall in public. It’s not a good feeling,, so please grant me the accessible space, which allows me to get into my car without having to drag myself and extra 10 or 20 feet.

    Before people make ignorant assumption that those who “look” healthy are using the handicap spots for conveneince should try spenindg a moment in the body of someone with an invisible illness. Just like I can’t look at you and judge your ignorance and stupidity, you can’t look at me and see my pain.

    Be thankfully for your health and for all that’s same and decent, stop judging people.

  9. What all this boils down to is …people should mind their own business!

  10. I’m sorry Sarah, but you are not correct. Please read the information from the following links to educate yourself further:

    http://invisibledisabilities.org/educate/accessibleparking/dontjudgebyappearances/

    http://thelawdictionary.org/article/what-are-laws-for-handicap-parking-spaces/

    Please don’t place yourself in the same category as the one who left the above “note” out of ignorance. Just because *you* think some people may be able to walk farther than 200 feet without difficulty, doesn’t necessarily make it so. I sincerely hope you never have to go through what some of us do.

  11. What a wince-worthy, ableist reply that first comment is. Some days those of us with invisible illnesses can walk 1000s of feet without resting, and some days we cannot walk 10. Some days when we are out and about we are counting steps, to be sure that we have the ability to get to the grocery store, and also stop for gas, and also be able to drive home and get into our beds. So who are you to judge?

    The fact of the matter is that a DOCTOR must make the diagnosis and designation that someone “deserves” a handicapped placard. That doctor and that patient make that decision together, and believe me, it is a serious knock to your pride to have to say “yes, I am disabled.” Do you have to make it worse by behaving in such a way, or saying “Oh, well, you can walk three hundred feet today, so you don’t really deserve it, you are not really disabled”?

    You get to choose whether you are a thoughtful, helpful ally to those who wish they didn’t have to have a placard, or whether you’re another person who’s draining what little energy we have, and wish we could devote to our family and friends.

  12. I am always impressed with the knowledge of people like Sarah and Denis who know that the system is being gamed and that the people can walk 250 feet and therefore we should deny them a simple accommodation. Sarah, here is an idea – Walk to the store or Ride your bike! Then you would not have to work yourself up into a lather about people less fortunate than you using a parking space you don’t need. Denis, it is illegal for a physician to authorize a handicap placard if it is not appropriate. While there is the occasional misuse the idea that patients are just asking for them and getting them shows that you 1) are not a doctor and 2) never worked in a a medical clinic and 3) are missing the point of the article. You cannot tell what a person is experiencing by watching them walk a short distance to a store.

  13. Christine Millier

    spider,
    I have carried the unwelcome passenger Fibromyalgia, I believe has been manifesting since childhood. Imam almost 65 years of age.

    i also have spinal injuries that have caused much pain. I had a disability parking permit for several years, while I recovered then when I had healed I did not apply for another until recently. I now need this eve though I no longer drive. My caregivers use it when transporting me to appointments and for shopping.

    I have been verbally abused for using disabled car parking, even though I have a permit card displayed.

    I recently had to visit the Centrelink office and there was al long line of people and several pairs of footwear.. It so amused me that people not wanting to lose their place in the line, they left their shoes and sat in the chairs provided.

    In Australia, there are several no cost or low cost services for people in need of assistance. These services and pensions are under threat though since a drastic change in Government.

    I just thought I would share a little of FMS journey.

    Christine

  14. This article hits close to home! I’m 43 and have an invisible illness . Sarah what you aren’t reading and ARE misinformed about which probably means you don’t have a loved one with a invisible illness, for a placard you don’t have to meet ALL seven of those criteria ( THANK God) ! My illness changes from day to day effects my heart and when I enter a store I might feel fine but when I leave I can be on the verge of passing out or in excruciating pain. What I deal with and what my condition is is nobody’s business! My DOCTORS say I need the parking plaquard or I wouldn’t have it. I try my best to look normal and not let the illness run my life I won’t let people that want to judge what they don’t understand run my life either! I get those notes often , I don’t read them I throw them away , my 13 year old son gets upset when we get the nasty glares, I say let them watch because if I pass out at least someone is watching to call for help 😉 parents wanted me to make a sticker to explain my disease for cars .. I don’t have to explain myself to strangers!!

  15. Leave a prayer not an unneeded sarcastic remark,. Walk a mile in someone’s shoes, feel their pain, research the illness if you are privileged to it. Most of all mind your own busines.. Surely your life is full enough not to involve yourself in others lives,

  16. i have hypermbilty sydrum , some days i can walk other day taken a step feel like my bones will break. i take pain killers just to walk , and even a small fall can break or dislocate my bones , yet to look at i look 18 not 32 lol and i look fine , but if your could see my pain i suffer each and every day just to do the small things i need to people would not be so quick to judge me . please remember not everyone conditions is the same every day and just cause you see them on a good day dose not mean you have any idear about there bad days . and also remember that just cause its a good day dose not mean we can run about mad as each step we take could put us into a bad day or could make us unable to walk the next day

  17. To the people without an invisible illness: If you don’t need the space, then it’s none of your business. I have RRMS and I have good days and bad. My good days consist of migraine headaches and difficulty standing and walking. My bad days usually put me in the hospital with no feeling in my legs, or just bedridden. If you want my parking spot so bad, I will trade it for your able body. DEAL? OK, then mind your own business. Oh, sorry that i don’t use a walker or cane, but at only 35 years old, the idea scares the crap out of me.

  18. Sarah, are YOU wanting the front spaces? Cancer, bad heart, crippling pain… Just because an individual’s daily-hourly struggles aren’t OBVIOUS TO YOU you pass judgement.Maybe you’d prefer to see citizens crawling in PAIN or gasping for air out of their cars. Shame on your judgement. Maybe you too will pass this way. Maybe YOU may feel the burn of stares. People either don’t want to see and hear of the disability or they react as you have. And as for the windshield letter, I’d rather people advocate for me than not. Too many able bodied folks park in the handicap area or dump their grocery carts in handicap spaces.

  19. Cardiology problems aren’t always readily obvious either. Would you deny a person a handicap spot because he is able to get out of the vehicle and walk, unaided, although slowly, into the store. Even though that walk may have just kicked his heart into afib or a flutter and he will be unable to function without having a surgery or procedure? It shocks me that people, like Sarah, honestly think that someone who doesn’t have a leg in a cast, or is missing a limb should be scrutinized.
    It also infuriates me to no end that people with absolutely no medical background or education feel the need to question a physicians capability to make a legal and well informed decision about a patients need.
    Grow up and realize that your overextended reach into others personal and sometimes painful lives would be better expressed by asking them if they need help. Opening the door for them, helping with bags and offering to put their cart away.

  20. Susan – Sorry, but your links are incorrect. The ADA regulations, which can be found here: http://www.ada.gov/regs2010/2010ADAStandards/2010ADAstandards.htm, clearly define the location of accessible parking to be closest to an accessible route. Distance to an accessible entrance is a secondary consideration/exception for convenience purposes. A simple example of this is an older store that has stairs at the entrance. In a case like this there will be an access ramp leading off to the right or left of the entrance. Depending on the number of steps involved and number of switchbacks on the ramp, the ramp entrance could be many feet/yards from the store entrance. The accessible parking spaces in this case must be located closest to the ramp entrance not the store entrance.

    Your first link just discusses distance as being a concern. I agree distance can and is a concern. But as I first stated, distance concerns can easily be solved by using an appropriate mobility device. The accessible route feature of ADA parking spaces makes distance a secondary convenience factor only.

  21. Laurie – I agree you don’t have to specifically meet all seven criteria. However, each criteria is intended to be nearly equivalent in terms of how severely they limit mobility. One criteria is not intended to be vastly more severe than another. Many states are now making this more clear by requiring everyone meet the “cannot walk 200 feet” criteria AND also meet one of the others. Florida is an example, here is a link to their application form: http://www.flhsmv.gov/dmv/forms/btr/83039.pdf

  22. Laurie – I agree someone does not need to meet all seven criteria to qualify. However, each criteria is intended to closely equivalent in how severely it limits mobility. That is to say, one criteria is not intended to be vastly more severe than another. It wouldn’t make much sense for example to allow someone with arthritis that can walk a mile qualify while denying someone that can only walk 300 feet that doesn’t have one of the other listed criteria.

    Some states, like Florida, have changed their application forms in order to clearly define the intended severity level. Florida requires the “cannot walk 200 feet” criteria be met AND requires one of the other criteria also be meet. Here’s a link to Florida’s application: http://www.flhsmv.gov/dmv/forms/btr/83039.pdf

  23. Christine — I am with you on that journey — not FMS, but I have chronic pain, SEID, celiac (which causes chronic fatigue among other things). I had a tumor removed from my spine & have permanent nerve damage. Some days I can walk just fine for short distances. Some days I can’t walk at all. I am with you on the journey, just in a different place.

    I feel very sorry for Sarah’s nitpicking, & hope she never has to deal with this sort of situation — because then she would be relying on the kindness and thoughtfulness of others which she is currently not displaying.

    In some instances, I can walk with increasing pain over sets of short distances — so while I may be moving just fine now, I am literally counting down steps. How many more steps should I take? Should I be using a “mobility device” so I can walk a little further and appease Sarah? How about the fact that my physical therapist has said using that would be bad for me, since I am in my thirties and it would destroy my back? That I should walk normally as much as possible? Is that sufficient “proof” that a sufficient number of doctors have sufficiently agreed that I am disabled, or must this sad, ableist, judging parade continue?

    Sarah, I genuinely pray that you never need to deal with the kind of system that you say those of us with invisible disabilities are gaming. I would be very, very glad if I could walk as far as I want to, if I could do all the things in life that I want to, if I could do small projects on fixing my home with my husband like I did before I became disabled, if I could garden all weekend like I used to, or go for walks with my son and dogs in the park. I would LOVE those things. But I can’t. I can’t do that. I can’t live my life. So if you could do me, and the rest of the people who live our lives the way that we must, a very small favor, please just STOP. If one out of one hundred people with invisible disabilities is gaming the system, that means the other 99 are not, and are doing what their doctors have ordered. And frankly?

    It’s. None. Of. Your. Business.

    The more time you spend on this, the sadder you look to those of us who must already spend our lives fighting uphill for even a shred of respect. Please, just stop. 🙁

  24. Physical barriers to access includes distance for some disabled people, particularly those who can still walk, whether or not with aids, but with resulting difficulty, pain, exhaustion, or the risk of medical consequences.
    In the UK this is recognised by the fact that disabled parking must be no more than 50m away from the shop entrance. I am astonished there is apparently not an equivalent requirement in the US given how crucial this is to so many disabled people.

    I also have badly controlled lupus, so have experienced similar things to the young lady in this article. I also have a progressive muscle disease. So I have experienced making my way around as a “”bad walker”, with a stick, a walking frame, a manual wheelchair, and a powerchair.

    It may surprise Sarah to learn that the hardest time of all was when I could still walk. Furthermore, the assertion that distance can “easily be overcome with the appropriate mobility device” is one of the most ill informed and silliest things I have heard in a long time.
    Using a stick or walking frame may keep you on your feet but it doesn’t make walking any less painful or exhausting. Using a wheelchair too early is really not the answer either. keeping those distances manageable on the other hand is.
    Put simply, when I was walking with difficulty, if a disabled space was unavailable (ie, in the UK, close to the door) , I used to have to turn around and go home. And you’re trying to tell me that at that time I was in LESS need of a disabled badge than I am now, in my electric wheelchair? Utter ignorant rubbish.

  25. Spoonydoc – I agree distance is an issue but disagree it is a physical barrier. When it comes to accessing goods and services the distance one travels varies greatly. In actuality the distance to access goods and services begins from where you live and ends where the goods/services physically exist. For example, if your sitting at home on your couch and want a gallon of milk it’s the distance you must travel from your couch until you have the milk in your hand. When you think of distance in this way almost everyone uses a mobility aid (car, bus, train, bike, etc.) to access goods and services. And this is why distance is not a physical barrier but rather a convenience factor. Even if you limit your thinking of distance to a starting point of where you park the distance one travels varies greatly. It varies by distance from parking location to store entrance and distance from store entrance to physical location of the goods/services within the store. For example, the distance to get a gallon of milk in a Walmart Supercenter is much greater than the distance to get a gallon of milk at your local convenience store.

    Given the vast differences in distances to access goods and services it is impractical to require parking spaces be within X distance of goods and services. This is true even in the UK where the 50m distance you referred to is not a “must be” but rather a preferable recommendation. Which is really no different than the US where it is also a preferable recommendation but not a law to be close as possible conveniently possible to an accessible entrance.

    I completely agree that walking with difficulty is much harder than using a power mobility device like a wheelchair. The distance you can travel in a power chair is only limited by the capacity of your batteries and the barriers of your route. If you cannot load/unload your power chair or a barrier is in your route it doesn’t matter how far your power chair can go. I can fairly confidently say that when you were still walking the number of buildings parking spaces you could access was far greater than the number you can access in a wheelchair. Most homes for example have front steps and are not wheelchair accessible and most parking spaces do not have an access aisle.

  26. Sarah
    I first found it offensive, but now find it almost funny that you are sitting there telling me what I did or did not find harder, or how many disabled spaces were “accessible” to me at different stages of my OWN disability. It is fairly astounding that you have the cheek to tell me my own personal experience is wrong.

    Your point about steps to private houses is moot. We are not talking about private dwellings, but disabled parking outside public shops etc.
    Your point about cars etc being mobility aids? Nope. They are convenient to use, not necessary. It might take you all day to get there, but you could walk if you wanted to. A true mobility aid is necessary. You can *never* choose not to use it.
    Your point about bigger shops being more inaccessible if distance was considered a barrier? Well, yes, absolutely. Larger shops ARE more inaccessible for some people, as it is the distance from car door back to car door which matters, self evidently.
    Your point about distance not being a barrier because it is a matter of convenience is equally wrong. As I explained, for many it is a necessity. If I couldn’t park close enough and the shop was too big I had to go straight back home, thus making it a physical access barrier. Maybe this is what you struggle so much to understand and why you can’t comprehend how few parking spaces used to be available to me “pre wheelchairs”.

    Distance acts as a physical access barrier for many disabled people just as much as a flight of steps for others. In other words the lack of a ramp will prevent access for some, but the lack of nearby parking will equally prevent access for others.

  27. Spoonydoc
    I guess we’ll just have to agree to disagree on distance being a physical barrier. But I’ll leave you with these two definitions:

    physical – http://www.merriam-webster.com/dictionary/physical (material)
    barrier – http://www.merriam-webster.com/dictionary/barrier (obstacle)

    When combined: A material obstacle like a curb or step, not unmaterialistic open space.

    Lastly, I stand firm that distance can easily be overcome by using a mobility aid. Which is the very reason mobility aids exist. The only reason you go straight back home when you can’t park close is because you choose not to use a mobility aid. Which is very different from not being able to use a mobility aid because of a barrier. Once is a choice the other is impossible.

  28. Spoonydoc
    Perhaps your specific case is an exception. But in general terms being confined to a wheelchair is by far more restrictive access wise than walking. I know from my own personal journey and of those I personally know, access is more restrictive when one is dependent on using a wheelchair.

    Steps/Stairs to private houses are not moot. I take it you have never heard of people having disabled parking spaces assigned to their private homes. And there are also many businesses operated out of private homes. Not to mention social visits/gatherings. There’s really no difference if your going out for dinner at a restaurant or a friend/relatives home. In both cases your accessibility needs are the same.

    Your own admission that cars are not necessary and only a convenience to use pretty clearly shows distance itself is only a convenience factor. There are many people that will use different types of mobility aids based on distance. Many people for example will use a power wheelchair or scooter for long distances but get by just fine with a cane, walker or no aid at all in their homes. The reason they do choose different mobility aids for different situations is purely a convenience one. No one wants to drag around a mobility aid if they don’t need to. But when it is necessary they are willing to put up with the inconvenience. Notice the “convenience” theme here surrounding distance?

    As far as distance being a physical barrier we’ll just have to agree to disagree. In parting I’ll leave you will a couple definitions:
    Physical: http://www.merriam-webster.com/dictionary/physical
    Barrier: http://www.merriam-webster.com/dictionary/barrier

    Do you think open space (distance) has anything to do with the above definitions?

  29. Spider.
    I’m very familiar with the system. And the system from my viewpoint is not working properly. As a permanent power wheelchair user reliant on parking spaces that can accommodate deploying my van’s ramp, I find the van accessible spaces full over 50 half the time. And you know what, almost all the time there are non lift/ramp cars/trucks/suv’s parked in the van accessible spaces, even when there are non van accessible spaces open just one or two spaces away.

    As far as doing things you love. I would love to do simple ADL things like: bathing, dressing, toileting, getting in/out of bed, etc. by myself. These type hardships are surprisingly not what upsets me since no one other than my body is preventing me from doing them. But when others prevent me from doing something when they have a choice not to that is upsetting. Having to struggle to walk a few extra parking spaces is no where near to being blocked from entering/exiting your own vehicle. One makes life a bit harder the other makes life possible. Big difference.

  30. Spoonydoc
    Perhaps your specific case is an exception. But in general terms being confined to a wheelchair is by far more restrictive access wise than walking. I know from my own personal journey and of those I personally know, access is more restrictive when one is dependent on using a wheelchair.

    Steps/Stairs to private houses are not moot. I take it you have never heard of people having disabled parking spaces assigned to their private homes. And there are also many businesses operated out of private homes. Not to mention social visits/gatherings. There’s really no difference if your going out for dinner at a restaurant or a friend/relatives home. In both cases your accessibility needs are the same.

    Your own admission that cars are not necessary and only a convenience to use pretty clearly shows distance itself is only a convenience factor. There are many people that will use different types of mobility aids based on distance. Many people for example will use a power wheelchair or scooter for long distances but get by just fine with a cane, walker or no aid at all in their homes. The reason they do choose different mobility aids for different situations is purely a convenience one. No one wants to drag around a mobility aid if they don’t need to. But when it is necessary they are willing to put up with the inconvenience. Notice the “convenience” theme here surrounding distance?

    As far as distance being a physical barrier we’ll just have to agree to disagree. In parting I’ll leave you will a couple definitions according to Merriam-Webster:
    Physical – having material existence
    Barrier – something material that blocks or is intended to block passage

    Do you think open space (distance) has anything to do with the above definitions?

  31. I have Ehlers-Danlos Syndrome (EDS: a connective tissue disorder), and a lot of chronic injuries related to that. My back gives out, my knees lock, my feet don’t always work. If I try to walk too far, I get an increase of compression in my lower back and the foot-drop kicks in.
    I have Postural / Orthostatic Tachycardia Syndrome (POTS: a “partial Dysautonomia”), and a lot of problems related to that. Being on my feet too long, especially standing still, can cause problems with by blood pressure and heart rate. I can end up with dizziness, nausea, vomiting, severe chest pain, lighheadedness, shaking, fainting.
    I mostly use a rolly walker with a seat. It expands the distance I can travel, and increases the amount I can “carry”, but I still can only go so far. Sometimes, I can’t use the walker because my back is too bad, so I can’t lift it out of the car. Sometimes, I use a cane, because it is lighter and less bulky — but then I have nowhere to sit down and am more apt to end up lying down in the store, which is not a popular move. Also, the cane isn’t as stable as the rollator, and I get wobbly — I’ve done a fair bit of damage to my wrists and CMC joints, twisting the wrong way, and also have injured my elbows and shoulders.
    On a good day, I may risk walking from a very close handicapped space to the nearest shopping cart, and using the cart as my walker. (There are lots of us!)
    On a really bad day, I can’t make it from my house to the car. I can’t make it from my bed to the bathroom. I may not be able to sit up in bed. So the whole parking thing doesn’t matter so much.
    On an in-between day, I may do an up one aisle and down another grocery run, if I really need to. You are most likely to see me in early afternoon or late at night, when the lines are short, since standing in line is no longer compatible with consciousness.
    Every inch between me and the store, me and the register, is a problem. Every inch of elevation as I try to climb a ramp. Sometimes, my disability isn’t so invisible, what with all the braces and the compression hose and me turning funny colors and my pupils going wonky when I overstress my body. But folks still give me a hard time about using the handicapped space.
    A power scooter would be a terrific help. (I know the ones in the stores are. I mostly frequent really really small convenience stores or much larger shops that reliably have working scooters.) But I can’t afford a scooter, I can’t lift a scooter. I can’t even lift a wheelchair anymore. To use any more sophisticated mobility aids, I would need a vehicle adapted to lift and carry them.
    Thank you for a terrific article about the problems of those who have less-visible disabilities.

  32. My apologies for the duplicate post. Apparently posts with links take a long time show up. My bad, sorry!

    Ginny, you should be able to get insurance to cover the cost of a power scooter. Modifying a vehicle to lift and carry them though can be very expensive. The cheapest route is an external lift on the back of your vehicle starting around $500. Most expensive would be converting a van to have a slide out ramp, that can cost $25,000+. Along with that 25k you get the headache of not being able to park hardly anywhere 🙁

  33. @Ginny
    You have POTS? I do as well I’ve never spoken to anyone else who has this horrible issues and would really like to speak more with you! Where I live unfortunately not enough is known About pots it would be great to have someone to relate to..

  34. i applaud you for posting this. I also suffer from invisible illness and get so tired of the LOOKS. We in this community know them. Also the comments by people that know nothing about what it is like just to get out of bed some mornings! Bravo to you!

  35. I have received so many dirty looks for parking in a handicapped spot after dropping my disabled husband off at the door. He almost always walks to the car when we leave, but people only see what they determine to be a healthy (if they only knew how wrong they are) woman parking in a handicapped spot. And yes, I do have the place card. Prejudice runs rampant in America by people who would otherwise swear they weren’t.

  36. I have an invisible illness, too. And it doesn’t matter how much explaining we do to people who do not personally suffer, they will never understand the importance of having accessibility when you need it. For those of use with illnesses that run through times of flares and remission, those without should applaud the fact that we know the nature of our illness and get removable placards. We know the importance of making the choice to put it on our mirror and taking that spot from someone who maybe having a worse day than we are. I am positive most of us suffer through not taking that space even though we should, and forcing ourselves to push through the pain like we do most every day.

    Sarah – you are correct. Having the spot closest to the door is not the most important thing. I don’t really think anyone said that. Not everyone’s condition warrants having a mobility aid and insurance does not cover as easily as you assume. Mobility aids are also very difficult to use, especially if you are travelling alone. They are bundlesome and incredibly hard to get out of the vehicle, along with being hard to maneuver once inside a store. You are also correct that physical barriers are a component. If we are in the midst of a flare and suffering, stepping up on a curb can be excruciating. During these times, the amount of weighing in the sufferers head as to how important it is to actually go to the store, the amount of energy expended to get to the product, and the possible time standing to finish your transaction and leave is unbelievable. Each move that is made for that day is carefully weighted out as to being necessary and worth the pain. So taking that spot at that particular moment is not some flippant act.

    I do not have any issue with someone wanting to leave a note for a vehicle that has parked in one of the spots that do not have a placard or tag present. BUT if they do, leave them the heck alone unless you are leaving a note of encouragement. To get that tag, they have been vetted and judged, and to take that spot at that period of time, they have done a lot more considerate thinking than you probably have all week. It isn’t your business. Save your “help” of us with disabilities to moments when you can be a blessing, not a judge in your ignorance.

  37. Faith – I have no issue with someone using a handicap parking space without a mobility aid provided they truly need the space. And by truly need I mean at the time of parking they meet the simple qualification of cannot walk 200 feet without rest. My issue is only with those that use handicap parking and on that day do not meet that simple qualification. These are the people I feel are taking spots from those that truly need them.

  38. If someone parks their with a condition which is made evident by the placard, they have determined there is a very big possibility they will not be able to make the 200 feet + there is the extra of after they actually get in the store, most of which do not have a place to rest. That’s why they parked with.

    The way you speak of it, if someone parks there and does not fall when they hit that 201st foot without stopping for rest, they should not have parked there.

    What we are saying is, you won’t know, you don’t know, so you have to accept their judgement call and get over it. Those that truly need it do not abuse it. As with everything else. And there is no way you will ever know. You are obviously fighting with the group that do use their placards responsibly so go find a forum where it’s evident they are not.

  39. Faith – Yes I am pointedly saying if they can walk 200 feet without rest they should not park there. This includes all the walking they do, including in the store. This may sound mean and unfair, but that is the law in most states. And with good reason because there is a very limited supply of disabled parking spaces. ADA requires only about 2% of all spaces be accessible parking spaces. Currently you have 10%+ of the population with disabled parking permits competing for just 2% of the spaces. This is causing a supply/demand issue and it is only going to get worse as the population ages.

    Now you may say we should just create more handicap spaces, change ADA to require 10% of parking spaces be accessible. I personally would be fine with that. But keep in mind, for those who still walk but cannot walk 200 feet, those extra disabled spaces will be even farther away from an entrance, 2-3 times farther. Disabled spaces are much wider than normal spaces and as you add more they quickly get farther and farther away.

    So what to do? It all comes back to mobility aids and barrier free routes. Because with them, distance is not an issue and handicap parking spaces could be located as far from the entrance as needed.

    Lastly, Yes I agree we won’t and don’t know if someone truly needs the space. Which is exactly why you don’t know if this group or any group is responsibly using their placards. Human nature and history shows no one or group does. We all on occasion abuse the privilege. I have yet to meet anyone that has not and this includes people with obvious disabilities.

  40. Not too long ago, someone alerted me to a video making the rounds on Facebook that took aim at people who go to the ER for pain medication. The video looked very professional, and the re-worked lyrics were set to a Taylor Swift song, “We Are Never Getting Back Together.” It’s a horrible video though, in that it perpetuates the stereotype that anyone who goes to the ER for pain medication is a junkie.

    Having suffered from cluster headaches, and with my wife suffering from Crohn’s disease, I can say from first hand experience that this is simply not the case. There are millions of people who live with chronic illness, be it Fibromyalgia, Crohn’s, Ulcerative Colitis, Trigeminal Neuralgia, Interstitial Cystitis, Complex Regional Pain Syndrome or any of a host of other so-called invisible illnesses. There are times when the ER may be the only option for any kind of pain relief, and to demonize those who suffer so much pain already is absolutely ludicrous.

    Therefore, I could not let this video go unanswered.

    What follows is something very different from what I normally do as far as educational chronic illness videos go. For better or for worse, it is me singing on the vocal track; and yes, I wrote all the new lyrics. Don’t worry, I didn’t try to sing along to a Taylor Swift song. Rather, I chose one from one of my wife’s favorite bands, the Gin Blossoms.

    I hope that this might serve as a counterpoint to that well-produced but ill-considered video that so many people think is an accurate representation of those who present at the ER with intractable pain.

    PS. When the video loads, there’s an option to watch in HD. I’d recommend doing that, it does make a difference. 🙂

    Enjoy!

    https://www.facebook.com/photo.php?v=1652773058277048

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