Disabled, Mobility Aid, and Chronic Illness

August 6th, 2013 by Carrie, the Just Mildly Medicated gal

When I was younger I didn’t give much thought to things like the meaning of disability, mobility devices, or a chronic invisible illness. To me disabled meant something clear, something visible. Mobility devices were things like wheelchairs, for those undeniable and clearly disabled people, or maybe a cane or walker for some who needed stability. I would have assumed the stability was needed because of age or maybe some accident.  Again, these weren’t well thought out opinions just an assumption at a moments glance.

If you’ve followed for a while you’ll know many women in my family suffer with a chronic invisible illness called Dysautonomia, but we didn’t always. I didn’t grow up thinking that something inside of me would someday change, I never thought I would slowly become disabled.

I am now much more familiar with what disabled means, what mobility aids are used for, and what a chronic invisible illness is. Though my personal awareness has changed I am forced to relive my old assumptions through others, some parts because of the assumptions they have and others because of my own fear of being judged.

WHEELCHAIR WHEEL CHAIR

These are some very recent photos that I have seen online. I know the people who posted them believe that they are defending the “truly” disabled, you know, the definition a person may have of disabled before being thrust into the world of invisible illnesses.

Some of you may know me personally or follow my blog regularly and think that no one would think this of me, but each of these photos could easily be someone’s impression of me. I have been blasted with a series of questions about my illness in an interrogation style, I have darted from my wheelchair to get in the car because I felt someone was watching, and I have had my use of mobility aids discussed without my being there and heard about it through the grapevine.

Yes, I’ll stand up to reach something if there isn’t anyone there to ask… and yes it may be for some Skinny Girl. Yes, I can walk and I use a wheelchair.

Though I like the idea of you defending the disabled, a sign like the one below confirms that you have a specific idea of what disabled looks like. A person with a disability that is not so clearly seen may be concerned about meeting your definition of disabled. Your intent of defending may in fact look like a judgment of the very group of people you think you are defending.

wheelchair#

 

The fact of the matter is I am permanently disabled, after many tests and many doctors weighing in I am listed as being “unable to ambulate or walk 50 feet without stopping to rest due to a disabling neurological condition.” This is not a fact I have come to accept easily.

Now for my own personal reasons I do not receive SSI disability, mostly because I can only tackle one beast at a time. I have started the process with my insurance for my power wheelchair and have been using a power and manual wheelchair regularly for months. I will pick up my placard Thursday. I have put off getting the placard for some time, let’s just say I’ve had more than 2 forms expire while making excuses.

So yes, I’ll use the disabled parking placard even though you might not look at me and be able to tell why. Fact of the matter is on a good day many people will look at me and assume I am abusing it. Sometimes I use a cane, sometimes a wheelchair, and sometimes I may just walk in. People will see me walk from the passenger door to a wheelchair, or may see me in a wheelchair one day and not the next. A wheelchair is a mobility aid, I personally use one to help stabilize my blood pressure and heart rate as postural changes cause drastic instabilities for me.

I understand how confusing it may be, and I know when you see someone using a handicapped parking spot and walk in to the location looking “fine” you may want to give a look, leave a note, or even confront them. I ask you to come away from reading this knowing that neurological, cardiac and pulmonary conditions, along with many other invisible illnesses, do warrant these accommodations. A doctor must grant these accommodations and the doctor will benefit in absolutely no way from doing so.

JMM gal in wheelchair

Love,

The Just Mildly Medicated gal

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22 Responses

  1. Thank you for posting this. I’m pretty sure I’ve judged people before for parking in handicapped spaces, although usually they don’t seem to have the placard), but I was unaware that a person could have an “invisible” or at least not obvious disability.

  2. Cathy H says:

    I know people would glare at me when I used the handicapped placard for my twin sister. We also have POTS….My twin was bedridden & only in the car when going to Dr. appts. She died the same year that I got glared at while I parked to go get her a drink. I really needed to keep her close to the store while I ran into the store. She was fragile & I didn’t want to leave her in the car by herself, but she needed something to drink & there was no drive through close by where we were going. I think I may have a little case of PTSD from using the handicapped placard. Well, I had better get over it,as I may need one myself someday…aren’t we always in denial…??

  3. Zoe says:

    I am so happy you posted this. Can I repost it on my Facebook? I was thinking of getting the card too. I have MS and in the summer, sometimes I have to park so far back that by the time I get my baby out in the cart and get to the door the heat has affected me and when I get in the store I have to wait and rest and cool down. All of this with a baby. But like you, I thought what will people say? They will think I am being lazy and assume I am on SSI disability… its pretty much something I have to think about and see if I REALLy need it. Somedays I say I need it and even get upset that I dont have it. When I have to walk all the way from back there, what if I get dizzy and drop my baby? or faint getting her out….. alot of what if.

  4. JessieD. says:

    MAN i can relate girlfriend. To Every. Single. Word. Got ugly look first couple times I stood up out of a wheelchair….people stare when you’re in it, people stare when you get up out of it ;) I loved the “Alcohol Cures” poster, lol! Made me giggle, and I needed to giggle, so thank you. I would love to re-post this on my FB page also. Gentle hugs and thank you.

  5. Lindsay says:

    I have to admit, sometimes when I use my handicap placard, I fake a limp if people are staring at me when I get out of the car. I know I shouldn’t, because I’m only contributing to their stereotype of what a “handicap” person should look like. But, otherwise, I’ll get nasty looks until I somehow convince people I qualify.

    I’m so glad you posted this.

    • Lindsay,

      That was a big part of how this post happened to be. My husband called me out on pretty much the same thing.

      It is easy to be articulate in a conversation or writing but the idea that I cannot explain to the person walking by that this is my “normal” and my condition is real. The idea of being judged from afar, it just really hits me to the core.

      I need to learn to be less critical of myself and give myself permission to be real even if someone else will judge it.

      So easy to say and hard to do.

      <3

  6. Monique says:

    Thank you for this post. My daughter is multiply disabled. She is almost 15. We both have EDS and POTS. She is intellectually a toddler and non-verbal. I park in the disabled spots with our placard/tag. To my absolute shock, a man in a wheelchair screamed at me a week after I had a pancreatic procedure and was struggling with my daughter to get from the car into the pharmacy. I tried to explain but he was very verbally abusive and insulting. I was used to healthy people telling me to get a job, but I never expected to be berated by someone else with disabilities. Just sharing.

  7. Hayley-Eszti says:

    Very true words here that I can 100% relate to. I’ve grown up around people with invisible illnesses as my brother has special needs and to just look at him you wouldn’t know. But I never really paid much thought to people who go on to develop a disablement later in life, until it happened to me. It does upset me when people judge me because some days I need a wheelchair and other days I don’t. I have been accused of faking it and crying out for attention. It’s sad. Being disabled requires a lot of strength in more ways than one I just wish there were more people who realise it.

  8. Thank you for sharing this post. I too suffer from chronic low back pain and I fear that I will have to have a mobility device of some sort for long trips. I have asked several doctors about handicap placards and they refuse to give them to me because they want me to remain as mobile as I can. The disability process is a pain in the butt and is a beast to deal with.

  9. Jack says:

    Handicap parking (reserved spaces) are part of the ADA regulations to ensure access to goods and services. Access from a parking context entails rules about reserved spaces themselves, signage, and routes to/from. In layman’s terms, there needs to be a barrier free means to exit your vehicle and enter a building. The only distance rule is that the reserved spaces must be located on the shortest accessible route of travel from adjacent parking to an accessible entrance.

    Distance however is not the vital part of handicap parking. Barrier free access from getting out of your vehicle to entering the building is. The slop/grade, the access aisle, the surface material, the curb cut, the door handle, etc. Even if a reserved spot was only 3 feet from the building, it wouldn’t be much good if you had to climb a 20 foot ladder, swing on a rope, drop through a window and land on an air mattress to get in.

    Distance is still an important factor and one of the main contentions when it comes to handing out permits. The contentions stem from variable distances each business requires to access their goods and services. A small coffee shop may take only 20 feet, a drug store may take 125 feet, a grocery store 500 feet, a baseball stadium 1000 feet, a large mall 2500 feet, etc. Add to this, the varying distances a person with a disability may be able to cover from day to day, hour to hour. There is no one distance that works for everyone and everywhere.

    The good news is there are many readily available means to assist with distance when barrier free access is provided: Wheelchairs, scooters, walkers, crutches, canes, etc. These mobility devices allow for turning distance into a convenience factor rather than a need. Simply choose the device you need to cover the distance involved.

    Eligibility for a handicap parking permit could then be determined by access aisle. If an access aisle is required to enter/exit your vehicle or transfer to your mobility device, you would qualify for a handicap permit.

  10. mathilda says:

    I have stage 4 breast cancer, metastasized to bone. I am on morphine every day (I have scripts for Three different dosages!) and there are days that in combination with blood pressure and blood glucose levels, I also manage bouts of vertigo that are unpredictable. Sometimes I use a cane either to help with balance, or because of pain. Sometimes I use the electric shopping carts, too. And, on other days, I can walk just fine. It depends on many variables, and there are days I don’t use the parking card at all!
    On very good days, I park out in the general area, because I don’t want to be seen as using the handicapped spots when I don’t have to. Of course, after shopping, there is always the possibility that I won’t be able to walk back to the car. Both my pain levels, and my vertigo issues, can change in an instant-and with no apparent cause for the switch-flip.
    I don’t blame other people for not understanding, there are days I still have a hard time with it myself. I’ve had 2.5years to come to terms with my limitations.. but it’s difficult to ask for help, even now, when I really DO need it!

  11. Thank you for educating us! I’d never heard of Dysautonomia before (which is surprising, since I’ve seen every episode of “House”).

  12. […] Disabled, Mobility aid, and Chronic Illness… […]

  13. Jenn says:

    I just found your blog from a kidney forum I belong to. Many of your words have come out of my mouth. I survived a really rare firm of what was supposed to be terminal cancer only to end up with a whole host of late effects, including ESRD and being on dialysis. I look good, but have a whole lot of stuff going on with me that no one can visually comprehend. Some days the choice is do Park in a disabled spot and get stared at and be able to make it through the grocery store or park further away and drag butt the whole time in there. Anyway, thanks for helping to open people’s eyes about invisible illnesses!! :)

  14. Ken McKim says:

    Those with chronic illnesses have enough to deal with without being harassed for using parking spaces that they are legally entitled to use. Unfortunately this harsh treatment of some of the sickest of our citizens shows no sign of stopping any time soon.

    http://youtu.be/15PdYLmBiKc

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