Invisible Disability (and getting yelled at for it)

I like to call my handicap permit my “Princess Parking”. I joke around about my permit and its convenience but if I’m being serious I’d rather walk a mile to the doors than live with neuromyelitis optica (NMO). I don’t look sick. I don’t live in yoga pants and hoodie sweaters. I don’t move horribly slow. I don’t have a walking aid (anymore) and I’m not a senior citizen. Instead, I try to always dress well, I’m usually carrying a toddler and you can bet that I’m distracted and in a hurry.

I don’t look like someone who should have a handicap permit. But I do. I have an invisible disability.

I haven’t felt my toes since 2009. Several spots on my body at any given time always feels like it’s on fire. My spine feels like a puppet master is pulling it out from the top of my head. And moving my legs or not moving my legs for an extended period of time (anything beyond 3 minutes) causes pins and needles. Having the permit does make my day just a little bit easier and I’ll take it.

So it’s frustrating when sometimes I get out of the car and people give me a dirty look or even yell at me.

I used to ignore their comments but then I’d find myself quietly stewing in my head. Then I started to see it as an opportunity to educate ignorant strangers on perception and creating awareness for NMO but that’s time consuming if I had to stop and chat every time. Truthfully, I even shoot a dirty look back if I’m in a bad mood and swear under my breath. It rarely happens because my husband is a 6’5” giant but occasionally folks will make comments when he’s with me and he immediately goes into defense mode (I won’t lie – it’s sweet and romantic).

Living with NMO is hard and frustrating. My normal every day is living with pain but I don’t like to dwell on it. I go about my activities to the best of my ability and forget that NMO lurks in my shadow until someone screams, “faker” or “that’s so wrong to use someone else’s permit”. I’m still trying to decide how to react when this happens and I’m looking to the NMO community for your ideas. Maybe there isn’t a perfect solution because people will think what they want to think.

11 Comments

  1. Amy Winters

    My daughter has nmo also and i would like to have a bumper sticker made saying i have NMO asshole! Look it up! Sorry for the language: )

    Comment by Amy Winters on June 9, 2014 at 3:05 pm

  2. iliana

    let them think what they want! i agree a bumper sticker that says NMO would be a great idea

    Comment by iliana on June 9, 2014 at 4:04 pm

  3. I keep waiting for this to happen to me, but so far no one’s done it. Summer Mortimer, a CDN Paralympic multi-medialist in swimming had a bunch of seniors bawl her out right after she got home from the London 2012 Paralympics. They were p*ssed off that a 20-something was parking in the accessible parking. They had no clue who she was or what her disability is. All they saw was a young person parking where they felt she had no business parking. I think part of the problem is that people think accessible parking is for SENIORS. Just because someone is older, doesn’t make them disabled!

    My response if it ever happens to me is going to be “Why would you say that to me?” and then sew what the person has to say. My follow up will be “Some people have invisible disabilities. Can you tell by looking at someone whether they have a pacemaker or spinal cord damage? No. In my case, I have a rare disease that can make me blind or paralyse me or if things really go wrong, it can KILL me. I would like to give you the benefit of the doubt that your heart was in the right place and your concern was that someone not use the accessible parking dishonestly. I’d like you to give me the same benefit of the doubt that if I park there, despite how you *think* I look that I actually have a need as well as the right to do so.”

    I think we need to stop calling those spaces “Handicapped/disabled parking” and call it “accessible parking”. People are getting too caught up on the “handicapped/disabled” part and forget that people who live with disability are often quite capable. It confuses people who expect those spaces to be used by people who rely on wheelchairs or canes. Not all of us require mobility aids and some of us use them infrequently. The general public has a very narrow view of what disability looks like.

    I wrote a bit about it here: http://www.allaccesspass.ca/1/post/2013/05/accessibility-not-just-for-the-disabled-by-lelainia-lloyd.html

    Comment by Lelainia Lloyd on June 9, 2014 at 4:17 pm

  4. I’m in the UK, so its a bit different, your disabled badge has your photo on it and you display it in whatever vehicle you are in. If you don’t have it they catch you pretty quick with the CCTV cameras!
    And then you get a letter.
    BTW I’m now registered blind due to NMO, so I’m banned from driving, if I did drive now I think they’d certainly have something to shout. I’m looking forward to get a google car, if/when they are available I definitely want one.

    Comment by Chris on June 9, 2014 at 5:27 pm

  5. Brooke

    I don’t have a witty comeback to share (wish I did) when people say these things. My daughter is 12, has NMO too, and has a handicapped parking placard. Sometimes when we pull into a handicapped spot and I notice people watching us, I will purposely wait to get out of the vehicle to avoid a confrontation. My daughter doesn’t know I do this though, she just thinks I’m slow at getting out of the car. Other times I’ll insist she hold my hand when she gets out of that car and I also walk beside her, holding her arm- I guess I must think it makes her look more handicapped. It’s ridiculous that I feel like I have to do this to avoid judging eyes/comments. She too has terrible neuropathy in her feet and legs and is blind in one eye, but to strangers she looks perfectly fine. It’s very frustrating that I feel the need to make her disability more visual so people will leave us alone.

    Comment by Brooke on June 9, 2014 at 6:50 pm

  6. Jenny Gran

    It would be a wonderful idea to have bumper stickers made! Short and Simple to catch eyes!!!! Of course using the Green color.

    Comment by Jenny Gran on June 10, 2014 at 2:15 pm

  7. Jeanette

    I truly understand your situation and experience. Indeed invisible disability. I guess we really have to be patient educating people about NMO (really tiring sometimes). Here in Taiwan, I couldn’t renew my handicapped parking permit, reason, they see me walking. But what they cannot see is the feet numbness and muscle power deteriorates after a period of walking, and the inconvenience it brings.

    Comment by Jeanette on June 11, 2014 at 6:32 am

  8. Sammy

    Many if not most disabilities are invisible when one is sitting at rest. However, walking itself is a very visible function. It is this very visible function that is being judged when one parks in a handicap parking space. What disability/illness/disease/etc. one may have is not being judged, in fact, it’s not even important information. What’s important is that the function of walking is severely and permanently limited. There are many visible signs of severely limited walking: limping, shuffling, waddling, leg swing, stooping, dropped foot, stiff legged, dragging foot, toe walking, slow gait, heavy breathing, pain grimace, stopping/going, panting, etc.

    We humans are constantly judging things. We judge the car you drive in with, how loud your music is, what cloths your wearing, what makeup/tattoos you have, your hair style/color, what jewelry your wearing, your mannerisms, etc. Many of these judgments occur unconsciously and we never even realize we are doing it. But when something falls out of our normal expectations then it becomes conscious. It’s only through repeated exposure and education that something perceived abnormal will fall into the unconscious normal area. But even then, your still always being judged, it’s just the result of the judging is more to your liking.

    Comment by Sammy on June 26, 2014 at 8:16 pm

  9. Sally

    The purpose of handicap parking is to provide access to goods and services to those who otherwise could not access them. They are not meant to be used for convenience, ease, or time saving.

    Simply having any disability, visible or not, does not automatically qualify one for a handicap permit. Your ability to walk must be severely limited. So much so that you cannot walk 200 feet. 200 feet is not far, the average speed of a normal human gait is about 3 miles per hour or 264 feet per minute. if you have a normal gait with no visible limitations you can walk 200 feet in 45 seconds. So if you can walk for 45 seconds with a normal gait, please do not park in handicap parking.

    Too many people today with placards do not meet this severely limited qualification. They may very well have limited walking abilities, but are not severely limited. This is one of the main reason the number of issued handicap parking permits has skyrocketed. Add on top of that the fraudulent use of placards (friends and family using placards being #1) and those who blatantly park in handicap parking without a placard. No wonder its very difficult these days for those who truly cannot walk 200 feet to find open handicap parking spaces. And even harder for those requiring van accessible spaces.

    If you have the means, even if it takes extra time and effort, please park in non-handicap spaces. Leaving the handicap spaces open to those who otherwise, even with extra time and effort, can not access goods and services without parking in them.

    Comment by Sally on July 3, 2014 at 11:05 pm

  10. Jenna

    Hi Sally,

    You’re absolutely correct that a handicap permit is meant for those with limited or no access. Perhaps I should not have used the word “convenience” even when describing the use of the permit in a joking way. What I will say is that the ease it does provide is a necessary one for myself and many other NMO patients. The difficulty with NMO is that patients never know if it’s a good or a bad day. By that I mean that many patients have bad days where their symptoms flair up, make it more difficult or not able to function with simple things like walking. And as much as many of us (like myself) would like to take the day off, the reality is that we aren’t able to and that’s where the permit comes into assistance. I should note that on my good days I always opt to park in non-designated spots. You’re right that the reaction I receive from those not able to identify my invisible disease stems from the abuse of others using the permit illegally or without just cause.

    Thank you for your input and your opinion. I’m sure it will provide a new perspective for our readers. It certainly did for me.

    Jenna

    Comment by Jenna on July 4, 2014 at 1:23 am

  11. Sandra

    I once replied to a lady that said “You Dont look sick!” With “you dont look stupid yet here we are!”

    Comment by Sandra on July 15, 2014 at 3:51 pm

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