MS Shaming: ‘You Don’t Look Like You Need a Handicapped Tag!’
Do you remember when you applied for a handicapped license plate?
I put it off for quite a while after I was diagnosed. After all, I could walk several city blocks fairly easily. I could still play a little tennis. Why did I need to park in a handicapped spot? But, there were days when I did. I needed that privilege when it was hot. I needed it when I was extra tired, or when rain or snow made slipping a distinct possibility.
The thing is, as many of you know very well, I didn’t look like I was dragging. I didn’t look like someone with a handicap. That’s the problem that Aneta Prantera, who has MS and lives in St. Catharines, Ontario, recently faced.
Aneta is 29 years old and she was diagnosed about four years ago, after she lost the vi
sion in one of her eyes. She’s an example of someone who looks healthy but who needs to use her handicapped parking permit on those tough days that we all have. That’s what she was doing, not long ago, in the parking lot of a large shopping center near her home. When Anita returned to her car after shopping, she found an angry note on its windshield. “A handicap permit is meant for handicap Only! You are not handicap. You should be assamed (sic) of yourself for taking a handicap spot simply because you are Lazy. Shame – shame.”
Aneta told the St. Catherine’s Standard newspaper it wasn’t the first time she’d heard about where she parks. But this was different. “There’s always a comment. There’s always something under someone’s breath. I shake it off when I hear it, but to come out to a letter on my car like that, I was taken back and in shock that people are that ignorant.” In tears, Aneta called her sister Christina to tell her what happened.
It all might have ended with that call. Another “shake-off” of another person who just doesn’t get it that some disabilities aren’t obvious. But Christina wouldn’t let it go. She posted a photo of the note on Facebook, along with this comment:
“I don’t usually make posts like this one but felt the need to share and hopefully educate this person or anyone else how feels the need to not mind their own business. This afternoon around 3pm my sister Aneta Prantera called Jada Melia and I very upset (crying and shaking to be honest) some extremely ignorant uneducated person decided it was their duty to leave this horrible msg for her on her car in the pen centre parking lot. As many of you know my sister was diagnosed at a very young age with multiple sclerosis. This chronic progressive disease is a daily struggle for her and the last thing she needs to be dealing with is being upset or feeling ashamed because she needs to park close to the entrance. Instead of taking the time to write this hurtful hateful note you need to spend more time educating yourself. Luckily she will get over this and move forward with her fight against this terrible disease that takes over too many young women’s (and peoples lives) but how disgusting of you to belittle someone else when you have no clue what they are struggling with. SHAME SHAME you say…. Shame on you!!!! I don’t know how you sleep at night. Please help me out and share this post so that maybe it can help educate people so that this type of nonsense doesn’t go on anymore.”
Christina’s Facebook post was shared more than 2,500 times in less than a week. She told the Standard, “I wanted people to understand that this isn’t acceptable. Something that was really bad and negative … turned extremely positive. By the end of the day (Aneta) was so overjoyed by the response that she got.”
Bravo, Christina! But, here’s the thing. The person who wrote the note, as nasty as it was, may have truly believed that Aneta had no handicap. He or she may have a relative with a disability, or may even be disabled … but with no understanding that some disabilities, like MS, can have symptoms that aren’t evident to someone watching.
So, here’s my question to you: how can we educate people about the sometimes invisible symptoms that many of us carry? What can be done so that there are no more nasty comments or notes, like the one that was left for Aneta?
Any thoughts?
(I hope you’ll follow me here on Multiple Sclerosis News Today, and also check out some other posts on my personal blog: www.themswire.com).
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Multiple Sclerosis.
About the Author
William Nash
I have had MS for 27 years and use my own scooter at the store these, but there were times when I was newly diagnosed that I was pretty normal looking... during this time, I would use a cane regardless whether I needed it or not. This was my way of mitigating these kind of moments, even to the point sometimes of faking a little to let everyone know I had a problem that justified me having a placard. Just my 2 cents...
Ed Tobias
Thanks for your 2-cents, Bill. I also used a cane, and dragged my leg a bit, at times when I didn't look "disabled." I'd forgotten about that little trick and I appreciate that you shared it.
Ken Bloom
My first response is F*** that person who wrote the note. However,
I have PPMS and need a handicap spot 100% of the time. I use a rollator and often find that all the handicap spots are filled by people that ambulate just fine. I too want to write a note to those people, but do not because I do not know their circumstances. You are lucky that you can ambulate well enough at times to not need it. My suggestion is to use the privilege ONLY when you need to and leave the spot when you do not for those that need it all the time. Thank you.
Ed Tobias
Hi Ken,
I agree with your suggestion. I'll add that I also won't sit in a h/c spot to wait for my wife when she's shopping. Though she also has a legitimate h/c there's no reason to occupy a spot when I can sit and wait for her anywhere.
Ed
Peggy
I see it and understand it all the time! Sometimes my own husband won't park in a handicap spot for me. He doesn't seem to understand the crub issues and my struggle to raise my foot high enough to not trip!
Sue Simonds
Not only do MS sufferers have to deal with very real daily challenges, but ignorance and the judgement that accompanies it are truly shocking . My own brother informed me that I did not have MS, but I was suffering from "self- pity and paranoia" ??. Education and a little kindness would go a long way.
Scaevola
I'm sorry, Ed, but I'm afraid we can't teach people, if they don't want to know.
I've had a similar experience just recently in Brussels:
I'm only 27 but I walk with a cane and I'm not allowed to drive, so I take the subway, every day, to go to work. In the morning, I walk perfectly fine, albeit unbalanced, but I can never stand up for too long - my legs start shaking and I might just collapse. Most of the time, I find a seat on the subway, or someone offers it to me (in this way, I'm using the cane like William Nash: to show people I actually AM disabled ^^).
So this one winterey day, I got on a packed subway, and an older lady offered her seat to me. I gladly accepted. A few stops over, we both got off and I headed for the coffee place. Standing in line there, the lady tapped on my shoulder. I turned around and a deluge of hate came out of her mouth: "I offered you my place, but you're not really handicapped; but my legs are hurting for real, so why did you take my place? You should feel bad etc..."
Being kinda grumpy in the morning I just looked her straight in the eyes and said "go away" - she did, I guess I looked really mad.
My thoughts go out to Aneta. It's horrible to be confronted like this. I hope none of us has to suffer this ever again
BELINDA
What a timely post! I also do not frequently post on blogs. However, I have to share my recent experience with this.
For several years, I also refused to get a handicap sticker for my car, despite the urging of my doctor and husband. However, a few years ago, I relented and got a permanent handicap plate, as my symptoms progressed.
On my good days, I can walk reasonably well in the morning as long as it is not too hot, albeit with a gait. However, it has been extremely hot in the state where I live.
A couple of weeks ago, when I parked in a Walmart handicap parking space, I heard a voice calling, "Excuse me Ma'am!" several times. When I turned, I saw that it was a lady getting into a car in the row in front of me.
She asked me, "Excuse me Ma'am, but did you forget your handicap placard?" Instead of getting mad, I did not say anything, and I pointed to my permanent handicap plate. I then told her I have MS, which limits the distance I can walk.
She was visibly embarrassed, and she apologized profusely. She also thanked me for not getting angry.
I think that it will take some time, patience, and perseverance before our society reaches a comfort level with "invisible" disabilities. However, I hope that the increased number of baby-boomers and the rise in folks diagnosed with auto-immune diseases will raise awareness organically, as there will be more skin in the game.
Ed Tobias
Hi Belinda,
Thanks for your comments and also thanks for taking the high road to "Excuse me, Ma'am." Interestingly, I've used the "did you forget to hang your h/c tag" question on folks who I've suspected have no h/c. It's a nice way of getting the point across to those who may be abusing the privilege. If the person does have a handicap, they may be grateful to know that they forgot to hang it. (I know I've forgotten).
Loutsiana
There have been two occasions in my 20 year MS life that I encountered similar comments. The first time was a note similar to the one you received left on the windshield of my car parked outside my pediatrician's office, while I was taking my newborn daughter for her first appointment. I was in my early 30s, it was cold and raining, I was caring an awfully heavy baby carriage, and I had a terrible relapse after delivering my daughter. Nonetheless, I managed to look ok, walk ok, and I was young. The note made me feel terrible for weeks. That was 17 years ago and I recall it as if it was yesterday. The second occasion was about 6-7 years ago, when a woman came rushing to me when I was returning to my car at a Costco parking lot and started yelling at me and telling me I should be ashamed for having parked in a handicapt spot. I was embaraced, hurt, and very upset. All I could say to the woman was that I would gladly trade my handicapt tag for her health. She mumbled something and walked away. I was shaken, particularly as my 10 year daughter was with me and she started crying not understanding what we had done so wrong to warrant such mean spirited insults from a stranger who felt strong enough about her feelings to walk across an entire parking lot to spew her nastiness to a total stranger. Both my daughter and I recall this incident as if it had just happened. Now, pushing 50 and unable to take two steps without dragging my feet and without relying on a cane, I no longer get any such comments; just the occasional stare of pitti which is almost as bad. My point is that these "how dare YOU use a handicap spot" events have such strong negative impact to people already dealing with a great deal of hardship that people who do not know any better should just give us the benefit of the doubt. It is not fair to be on the receiving end of such mean spirited confortations. But then again, it is not fair for young people to get MS and see their "normal" life slip away day by day. The fact of the matter though is that MS it is not within our control; however, being nasty to our fellow man is definitely a choice we can all make.
Ed Tobias
Hi Loutsania,
I appreciate your comments.
I've, also, used your "I'd gladly trade mt handicapped spot for your health" comment once or twice. There are some things about MS that ARE within our control and one of them is how we respond to the curve ball we've been thrown. As you say, being nasty to others is our choice. I sure hope you're choosing not to travel the nasty road when folks in parking lots are trying to force you to take it.
Deborah Gostin
I have often thought it's time to put something up in our windows that says something about not looking ill, but feeling ill. I thought of creating some things (that I can sell for very little) that could help a lot of us! Sunshades, flyers, stickers, etc. with phrasing that helps others understand.
Example: "You cannot see my multiple sclerosis - my symptoms are invisible to you." "Yes I can walk, but it hurts a lot." "You cannot see my disability." "You cannot feel the pain in my legs." "You don't know about my numb feet." "You have no idea how badly the heat affects me." "Do not judge me - you cannot see my disability."
Even wearing a T-shirt! Or handing out a flyer (that you keep copies of in your car!) I like to make a point right up front, except I haven't done anything I've suggested yet! I've been thinking about it for a long time, but I think it's finally time!
Ed Tobias
Hi Deborah,
Thanks for your comment. I think that your last suggestion, the one about a flyer, is a real winner. I don't see it as a money-maker for you, or for anyone else, but I could sure see a national MS organization publishing a hand-out that we could all keep in our cars. Title it: "Why I May Not Look Disabled." The copy inside could explain things that we all know but that the average person doesn't.
Ed
Deborah Gostin
Thank you Ed. I appreciate your idea. My idea is not to hand out anything too lengthy, and a booklet from the MS Society is going to cost them lots of $ to reproduce for the many dealing with this disease.
I am already planning on just printing some papers that I can keep on my car windows for when I walk away, and a couple just to hand out to anyone who looks at me funny.
Making money was not my first thought; it was an after-thought. Before I had to go on disability, I was a marketing/advertising/public-relations professional. There are some things I can still do....
Deborah Gostin
And I see I made an error in what you said... I was thinking about a small booklet rather than a flyer... Yes the MS Society could do that. But here's on thing they stopped doing and I never understood why. We used to get cards that explained why we might need to use a restroom somewhere where the public isn't normally allowed to... but they changed that to a generic card that is more non-specific. I'm not sure how willing they'd be to do an additional flyer when they have so many we can already use...
Ed Tobias
Maybe I'll contact the MS Society in Wash, DC and make the suggestion. I wonder if folks reading this in other countries would be willing to do the same with their national societies.
Deborah Gostin
Actually Ed, I would greatly appreciate it if you let me explain something further that I didn't want to share with everyone, but it's too late already. I have already designed something for myself and will be writing something at length to propose. Even thinking about a media campagin because this is a common problem for many who have other illnesses as well. I was already planning on doing something with the national society and perhaps a couple of other organizations before I mentioned the flyers, etc. It's what I was going to discuss with them. I have been a volunteer photographer for a number of local events already. If you're interested in perhaps doing something together, and you have a Facebook profile, I can send you a request and we can talk....
Deborah Gostin
Otherwise, I'd appreciate if you didn't step in front of me to do what I already planned on doing... many thanks.
Ed Tobias
Deborah,
You had a great idea. Go for it. (And please let us all know if any of your ideas turn into products).
Ed
Deborah Gostin
Many thanks... fingers crossed!
Diane Lavington
Deborah,I love your idea, it could really be beneficial to as you stated others with illnesses besides multiple sclerosis. I too have recently been verbally attacked while riding a bus because I chose to sit in the seats in front for people with disabilities. The situation really got ugly just because someone thought I didn't have a disability or the right to sit where I was sitting when someone who got on had a cane. This instance left me feeling unnecessarily angry and wanting to do something to broadcast that just because a person doesn't appear to be disabled does not mean they aren't, and should not have to deal with other people's mean judgements in public or in private ever.
Julia
It seems many of us have experienced public shaming in regard to handicap parking. Another issue are those that constantly use handicap parking because they just need to run in and get something and it will only take 'a minute'. I have just driven by some stores because there are no handicap spaces. When you mention something in the store they reply that they don't monitor that.
Another issue is obesity. Some people with handicap tags are because of their weight. While many of these people have medical issues, they maybe could improve their health and quality of life if they would change their lifestyle. Many handicap spots are taken by these individuals. I am sure that many people with MS would gladly change their li0festyle if they could get back some of what they lost.
FatLady1981
I happen to be obese and I have MS. I don't have a disabled permit because of the very stereotype illustrated in this comment. I don't look ill but I do look obese. I have RA,MS,and asthma. I am also hypothyroid. I eat less than most normal weight folks and always have. I don't want surgery for weightloss. I have foot drop and numb right foot. I fall easily. Heat exhausts me. I simply don't shop when it's hot because I can't walk that far.I suffer greatly on a daily basis. A disabled permit or tag would help a little but I refuse to have people staring at me thinking I am just fat and lazy! As I age and things progress, I see myself becoming a recluse.
Ed Tobias
Hi,
Thanks for sharing your predicament. If I had to choose between having people thinking that I'm fat and lazy and the possibility of falling, suffering, not shopping when it's hot, etc. I really think that I would swallow my pride and get a handicapped tag. Obviously, I'm not you and can't experience what you feel. But become a recluse because people stare at me? Nope.
Shona Kozma
Maybe we could get an MS Society sticker(with symptoms listed) stating we have MS to place next to the Disabled parking sticker/permit.
Ed Tobias
G'day Shona,
Thanks for the idea. But, if the sticker is near the parking permit then you'd need to get the person who is complaining to go to your car to read it. It might be easier to hand the person a card with that info, as Deborah suggested earlier.
Jennifer Eaton
When I lived in the suburbs and was driving, I also received negative comments from strangers who thought I was abusing my handicap placard. I used to get mad, too, when the handicap space was occupied by someone who had no obvious disability. But a colleague of one pointed out that you can't judge someone's need for a handicap placard just by looking at them. That person may also have a "hidden" disability, such as heart issues, diabetes, breathing problems, etc., that makes walking difficult. Now, I try not to judge others who need the handicap parking spot, as I hoped others wouldn't judge me.
Ed Tobias
Hi Jennifer,
Thanks for taking the time to comment.
I, also, try not to judge though I have to admit it's sometimes pretty difficult for me to resist sending a nasty look in the direction of some folks.
Alicia
I am glad you wrote about this. I was laying in bed thinking man it really upsets me when people yell at me for using my handicap placard. I started googling to see if anyone else has to deal with this. I found this article. I have hereditary rickets. I don't always park in the spots, especially when handicap spots are running low because I can walk with my legs still. Some people need the space more urgently for many reasons.
Stephen Peach
I think people need to stop policing handicap spots when individuals have placards. They are not as easy to obtain as the general public believes them to be. If the placard is there, the spot is deserved, plain and simple.