What is a ‘handicap’? If we look it up, the definition goes like this: “A physical or mental disability making participation in certain of the usual activities of daily living more difficult“. Well, I think we can all agree that Parkinson’s Disease definitely can fall into that definition! However, there are some handicaps – including PD – that can be ‘invisible‘ to others… and I have found that can sometimes cause problems!
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A Little History… So to give you a little back history of why I am bringing up this subject … First of all, let me say I do like to walk! I even have joined the ranks of the mall walkers here at our local mall – usually a couple of times a week (no old jokes now!) But after I was diagnosed with Parkinson’s – especially before the DBS – I sometimes had trouble walking longer distances, mainly because of the foot dystonia. And I began to wonder what might happen if I had to park somewhere a long ways from where I was going and had walk in or out – with dystonia and even just general PD rigidity, that could be a chore! (And no, I’m not going to hitchhike!) So about a little over a year ago I was at my annual physical with my doctor, and I asked if I might be able to get one of those handicap placards that hang from the mirror of your car. At the time, I didn’t know if or when I would get DBS or whether it would even work, and I figured this is a good way to keep me from walking long distances when my PD symptoms flared up. To make a long story short, he did fill out the required form; I took that into the DMV where – without any hesitation after reading “Parkinson’s” as the diagnosis – I was handed a handicap placard.
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Since then, I have used that card on and off – especially when my meds are beginning to wear off and I can’t find a closer parking spot. And this is where the ‘invisible‘ comes into play. You see, some disabilities are more obvious than others. Many are immediately apparent, especially if someone relies on a wheelchair, cane or walker. But others – known as “invisible” disabilities – are not so obvious. Parkinson’s has been called one of these ‘invisible‘ disabilities. Unless one is in an advanced stage of the disease, at first glance we Parkies may look ‘normal‘ to other people for the most part – especially if our meds are working well at the time. (Someone with tremor – well, that can be obvious sometimes; but at other times it might not be). And this is not just PD, but other invisible conditions as well – a good example are those who are deaf or have some another hearing disability.
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So how would we define an ‘invisible‘ disability? (Do you get the idea I like definitions? <grin>) Here are a few I came across:
“… chronic illnesses and conditions that significantly impair normal activities of daily living, yet those affected show no outward signs of their illness“;
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“… symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, neurological disorders, learning differences and mental health disorders, as well as hearing and vision impairments“;
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“… a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.“
These ‘invisible‘ disabilities happen more often than you think. Here are some statistics that I found on this subject:
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96% of people with chronic medical conditions live with a condition that is invisible. These people do not use a cane or any assistive device and act as if they didn’t have a medical condition. About a quarter of them have some type of activity limitation, ranging from mild to severe; the remaining 75% are not disabled by their chronic conditions.
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1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74% of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely by whether or not a person uses assistive equipment.
Wow bet you didn’t know that, huh? It sure was an eye opener for me. And you see, this is where the problems begin.
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Here Comes The Judge!Because such a disability is ‘invisible‘ it can lead to a lot of false judgments, condemnations, and misunderstandings. It turns out that a lot of folks – even myself before I was diagnosed with Parkinson’s – tend to think of someone having a disability only if they are using a wheelchair or walker. And this is the main problem we with PD have using these handicap designated areas. I’ve never had any verbal abuse yet – like “Why are you using a handicap parking space? You look fine to me, you young whipper-snapper!! Save it for someone who needs it!“- although I have heard stories from other PD patients that experienced this type of abuse. But I have had a fair share of… well, dirty looks. It’s a very uncomfortable feeling to have people staring at you because they think you are not ‘handicapped‘ and are trying to ‘get away‘ with something. Often I have used my placard and – out of fear – tried to enter or leave the car when no one was looking; I’ve actually been so self-conscious of using a handicap parking space that I’ve feigned a limp when leaving the car! (Well, maybe not feigned – when the meds are running out my left leg tends to want to slightly drag anyway – but rather exaggerated the limp…Â Then just call me ‘peg-leg’ Tom!)
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But, you know, we Parkies shouldn’t have to feel this way! We have a ‘valid‘ disease that can cause us to have difficulties with everyday tasks… and in a lot of cases, those handicap parking spots help us get into and out of places easier and with less stress.
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The biggest problem is that folks tend to judge others by only what they see, hear, or by the way someone else looks. It’s just easier to do that, it seems, than to stop and consider the other options – as they say, ‘Walk in another persons shoes‘. Another problem may very well have to do with education – Parkinson’s isn’t as well known as, say Alzheimer’s, and people just don’t know exactly what PD is and how it can affect a person. And if by chance they have heard of Parkinson’s, most likely it was someone they knew that also had typical PD tremor – which makes those of us without tremor (about 15% of Parkinson’s patients) even more likely to appear ‘normal‘. Without this knowledge it becomes easier to make a hasty judgment on whether someone is handicap or not. I’ve often thought about having some cards printed up that say “I have Parkinson’s” along with a short explanation of all the woes that come with the disease, and handing them out to anyone giving me a dirty look when I am using a handicap parking spot!! (No, I haven’t done that – thought about it, yes – although that would help educate folks about PD! But that may get me into more trouble than it’s worth!)
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Prove Me WrongAll this can be very frustrating for those of us with a condition that may not be outwardly obvious, because you are always feeling that you have to ‘prove‘ or ‘explain‘ to everyone around you that you have Parkinson’s and that can be a disability. Sometimes you just want to scream out, “Do you think I enjoy having a disease that breaks down my brain cells and causes me stiffness, tremor, and mental difficulties?!? Trust me, if I could change things so that I didn’t have this disease and therefore didn’t need a handicap parking space, I would do it in a heartbeat!“
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So do I use my handicap placard all the time? Of course not, there are times when my meds are working fully, along with my DBS, and I have no need to use a handicap spot. As I mentioned, I do like to walk when I am able, so when things are working well I will park in any available space – on ‘good‘ days I love to walk… we Parkies can use all the exercise we can get! But it is nice to have the option to use a handicap spot when things, like meds, are not working as well.
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So Remember…Each one of us is different in terms of our ‘disability‘, and just because one can’t ‘see‘ it doesn’t mean it’s not there. Don’t judge someone based just on appearances! The next time you see someone using a handicap spot (with a valid handicap ID, of course) and they don’t look ‘handicapped‘ to you – stop and think twice before you cast them an evil eye or say something you might regret. They might have one of these ‘invisible‘ conditions – a back injury, neurological disease, chronic illness, heart condition, muscle or bone disorder, organ transplant, prosthetic, and several others. And what might seem easy for you might be a mountain climb to them! I bet they would be happy to trade in their disability credentials for a cure! I know for sure I would…
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So what are your thoughts on this subject? Feel free to share your thoughts below… And in the next post I will continue my series on Parkinson’s “Illegitimate” children! Thanks for reading!
