Chronic Illness

Some Illness are invisible

How Dare You Judge my Handicap Sticker

Having to go to appointments to my doctor here in Rhode Island, so we can again fill out the form for the state to confirm that I still qualify for a handicap sticker for me, causes a humiliating and heartbreaking feeling to have to be reminded that I have two incurable conditions. And yet, I have to get that signature to confirm that I am still dealing with this future. And then, when I am not in a wheelchair, thus appearing normal, I also have to deal with those of you out there who feel so free to judge people like me, despite possessing no knowledge of conditions that require the need for this. So many jump to the conclusion that I am probably not deserving any special compensation.

So what has brought this judgment by others towards those of us with the  handicap placard? It reminds me of the unpleasant memories back in elementary school where one classmate would do something stupid, the teacher would ask who was responsible, not one would rat on that person nor would the person give themselves up. The result would be the entire class had to face the punishment. It always stuck with me that punishing the many for the sins of a few as being overly punitive and unfair, and here we are now as grown ups still facing that type of attitude. Thanks to those few out there, that have abused a handicap placard, you have given the green light for other people to assume that if we look normal, then we must have no need for these limited privileges. I think most of the abuse comes from individuals somehow obtaining a family member’s card and using it like their own. I agree that is wrong but it should not reflect on the legitimacy of those of us who need this capacity to park close to stores or businesses in which walking significant distance presents an obstacle. It doesn’t delete the majority of us that truly need this ability to park close to be able to enter a store.  Also, some states make it much easier for abuse of the placard. Talking with people from other states, I realize that each state has different requirements to obtain the handicap placard. For instance in California, all you need is a note from your doctor and when it expires,  you just reapply. So we cleary need to make the process of obtaining the placard more uniform across the country and also seriously consider two types – one that doesn’t expire for those of us with permanent incurable conditions and another type that would be a temporary situation for need. And both should require a visit to the doctor confirming either situation.

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So, let me share just a few stories of disabled people that have been approached with judgement and what they are facing daily with their conditions:

  • A person living with Ehlers-Danlos Syndrome, a painful incurable connective tissue defect you are born with. This individual endured over twenty surgeries, many on the legs, to only be judged as they walked into a store, for the first time, instead of using the wheelchair they lived in for four years thanks to numerous surgical leg repairs and long hours of physical therapy. Instead of the joy of this hard earned accomplishment, this person was judged from using a placard by a person that didn’t see a wheelchair so therefore there must be no need for a sticker?
  • An MS patient returning to their car, walking proudly but with tremendous strength and caution to then being reamed for taking the space away from a “real person” needing this help. Would someone like to walk in their shoes to the terror and horror this condition can cause to their lives and body?
  • The cancer patient that comes to the car to a note on the windshield that they are being rude for taking up a space. This person is terminal, lost their hair and facing frequent chemo treatments leaving them weak. And someone else gets to judge their need instead of their doctor?
  • Then there is the woman with Turner’s syndrome gets approached in a parking lot of a mall for “abusing her placard” – this woman faces daily issues with hearing loss, fatigue and the threat of an aortic dissection and then gets judged like this?
  • Or how about a woman not able to walk far due to her medical issues that wrote to me: “Truly, I have put off getting my plaque because i don’t have the patience to be nice when a complete stranger comes up to me to berate me. And, i just don’t want that experience.” How sad is that that judgement being done by others is going far enough to prevent this person, who deserves this help, to not want to go through the process for fear of the possible judgement. You may say, why would she do that to herself, but trust me, when you live with a life altering disability, you don’t always have the determination and strength to keep fighting the injustices you face. It can take all the starch you have in your body to just get through your day.
  • And just reported today, a young college woman, upon arriving to campus parking, was interrogated by a security guard. He asked her whether she was using a placard that “belonged to someone else, or it’s not your grandmother’s, right? And if I look up your information, I’m going to find YOUR name?” She responded “yes, it’s my placard. I have chronic illnesses” Walking away from this insult, she was almost late for class and on the verge of unnecessary stress overload. This young woman lives with a life in an out of a wheelchair, tubes, pump bags, copes with not only chronic pain and fatigue from CRPS, joint hypermobility syndrome, mitochondrial dysfunction and dysautonomia. And here that one day she was able to attend without the wheelchair, she had to face and be confronted by this cruel judgement!
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Tips for Those that Tend to Judge Others:

  • You should never judge a book by its cover, ever!
  • Don’t approach someone with rude comments – you are most likely attacking the person that truly needs this card. It is threatening and emotionally hurtful. You have no idea what they have been through and am going to continue to go through. Believe me, you don’t dream of having this card hanging on your car to look cool!
  • Just because someone doesn’t look handicapped, does not mean they are not dealing with a difficult condition. The words Invisible are used for a reason – you and I can’t see inside someone to truly understand what they are facing.
  • Your lack of understanding makes you a discriminating person who needs to learn to have an open mind when it comes to people living with disabilities. Just because you can’t see what is wrong doesn’t mean it isn’t there.
  • Do you realize all you do in life is being observed by your children or even grandchildren. We should be teaching our children to never judge others and be accepting of others, no matter their race, religion or disability! Where do you fit in?

Tips for those that need to use a handicap sticker:

  • Although it is terribly hurtful to be approach, try hard to be the bigger person and try to see if you can use this uncomfortable moment to educate them, although you owe them nothing.
  • Consider putting a small list of some of the things you face with your condition on the windshield to be read while you are not there to educate them.
  • Consider having in the car a small card about your condition you can hand to them and then walk away if talking is not in order
  • Do not get into it with them and if need be, report them either to the store staff or even the police if you feel you are not safe.
  • Remember, as much as it hurts and angers you, try to remember they are the people with problems – they are hurtful, discriminating and setting a terrible example of humanity and I bet you would rather deal with what you are facing then live in their shoes and be that person.
  • If you get lucky with your health and no longer need the placard, then be the better person and return it to help keep the need appropriate and not abused!
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The intent of this article is to inform and educate in an effort to attempt to begin a process of examining our collective attitudes toward the handicapped with the goal of increased public understanding of the challenges faced by the truly handicapped. You can’t  judge a book by it’s cover. Many  people live with invisible illnesses. Why not turn this around and believe what a person tells you, trust first, instead of jumping to judgement. With my condition Ehlers-Danlos syndrome, I can be walking a short distance one day and then be back to a wheelchair for some days, depending of subluxing of the hips, tibia, and fibula. It is heartbreaking when things slip backwards, and then to have to add your judgement too?

Let’s try to be kinder, more tolerant  and work towards becoming an understanding society.

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