Where’s your disabled person?

A few months ago I decided to ask for a disabled parking permit for Genny. Every time she needs to get out of the car I go nuts from worry and start counting the steps she will need to take to get to destination. Then of course I worry about the inside of the building, how far she will need to walk and whether she will have to stand. Standing is no longer an option for her and walking is excruciating. 

So we got the parking permit and now, at the very least, I can park closer to whichever entrance as required. I know this brings a certain level of comfort to Genny but I also realize it’s always a huge stress for her because standing is so difficult. Still she looks perfectly normal and one wouldn’t be able to tell of her difficulties unless she mentioned them. It may be that since she was tiny, she has had to learn how to function like so and honestly she is doing an amazing job at pretending.

So this little introduction brings me to Montreal last week during our visit to the neurologist. The first thing that happened that sent me to a bad place was when I dropped her off at the autonomic lab for the orthostatic intolerance testing. It was really bad because of course, it’s a HUGE hospital and when I came in I omitted taking a wheelchair because it seemed to me like they were carrying signs for various department and to be honest, I am still somewhat shy about “borrowing” them. BIG MISTAKE. Genny of course was struggling all the way to the lab and was sitting every 10 steps or so – and when there was no seat I thought for sure she was going to pass out. Once we got to the lab everything was good, but I told them we couldn’t get her registered as she couldn’t walk – bad planning. I said I’d go do it and would come back soon. To that, they agreed and it didn’t seem to be a problem. The lady at registration was very kind and understood that my daughter couldn’t be there. That was fine. But then, she told me to go to the “accounting” office which I did. They had to call the “person in charge” who insisted they needed to “identify” my daughter who by the way doesn’t have any kind of photo id card as she hasn’t been in school for 7 years now. I tried explaining that she couldn’t walk and was in a terrible state at the very moment but still, she kept saying “yes but it doesn’t matter, (and finally) next time you HAVE TO bring her over here”. It so didn’t make sense and I so wanted to say NO but then of course I lied and said “OK, we’ll make sure to do that next time”. The so called “boss” just didn’t understand – we were in a hospital setting – how could that be?

Then, a few days after the diagnosis we are walking on clouds. So we decide to go shopping and pick a parking spot with a disabled sign (we have the permit with us) closest to the main entrance. Always as worried for my daughter I count about 15 steps and a flight of stairs of 5, then another 10 steps to get into the mall. I know this will be difficult and again I am holding my breath and thinking that if I can just get her to walk in and sit I can fetch a wheelchair as we are right next to the service area.

When we parked in the disabled area my friend was driving and the first thing she said was “oh no, maybe we should have parked further”. To that I replied “why should we have done that – Genny has a permit?”

It turns our there were two morbidly obese women in their 60’s or so, each of them sitting in their automated wheelchair or scooter. As soon as we got out of the car, the first one yelled out “Hey!!! That parking spot is reserved for the disabled!!!!” I felt like a bomb about to explode but I had to act fast so that my daughter wouldn’t pass out and I pointed to my daughter while my friend was trying to explain that we had a permit and then again, the woman yelled “WELL, WHERE’S YOUR DISABLED PERSON???”

There are no words to describe the frustration and rage I felt at that very moment. Had it not been that I had to take care of my daughter, I think I would have asked them to get off their chair and give it to me. I know this must sound crazy but that is really what I was thinking. I often feel that a number of people with less severe illnesses are granted more services and privileges than people with EDS for so many reasons – some of which are more or less easy to understand.

Genny is slowly accepting the use of a wheelchair and says that the anxiety that comes from using one is less than that of calculating the number of steps to destination which in the end is worth the concession. It also grants her the ability to act as a normal teen, that is to go shopping and that makes me very happy.:) As she slips on a pair of shoes and steps out of the wheelchair to look at herself in the mirror, I realize this is not so bad after all!

In the end, the frustration was all worth while and I will keep using the parking spots and chairs regardless of dirty looks.

I was prompted to write this after reading this post. Walking can be so difficult for people with EDS and it breaks my heart to think that people in general have no clue of what it means.


12 thoughts on “Where’s your disabled person?

  1. I seriously wish people would just be more concerned with themselves than with that of others. As you can probably imagine, having a child with autism, a child who looks perfectly normal set us up for a lot of judging. I learned how quickly people pass judgment, about stuff they know ABSOLUTELY NOTHING about. I learned to block them out, those people don’t matter, they are judgmental asses, sorry, just no other way to describe them and I got them out of my life as fast as I can. Those ladies, forget them, what they think (which is ignorant because they don’t know the situation, and especially since they didn’t, not for a split second try to be positive and oh, helpful maybe) is meaningless. Surround yourself with the positive people in the world. They are out there, and every positive person, in my accounting, makes up for at least 5 miserable people! And the wheelchair, accept it as an accommodation for now, as a means, as you said, to do normal stuff such as going to the mall, trying on clothes. Because happy, positive experiences like that probably will go a long way towards helping your daughter feel good and feeling good will help as she begins to get help she needs from doctors and necessary therapies and all of that working together equals the best chance of her seeing a positive prognosis.

  2. Thank you, Charlotte. And you know I actually thought of you when I wrote this because in a way these are the worst kind of illnesses – the ones where they are not or do not appear as “crippled” (sorry about the intensity of the word). I can’t even begin to explain what I was holding in. There was a time when I would have been understanding and have taken the time to explain – but now, after being left to fend for my daughter on my own with little or no effect I have zero patience and my compassion (for certain people and situation) is simply gone. I also believe as you say that things will get better in time with the proper treatments. I’m so very frustrated that my sick child as been left without treatment for so long – unbelievable medical negligence in so many ways. I sometimes feel like a storm waiting to explode and I’m sure you know how I feel. I was drawn to your blog because of our similarity in struggling to be the best possible moms of exceptionally beautiful children treated so unfairly.

  3. My mother uses a walker, that has a seat…so she can sit when she needs to. She has a tremor disorder, not Parkinson’s. She gets tired when she is out. It is relatively easy to get in and out of the car. I don’t know how your daughter would feel about something like that.

    • It’s funny you mention that as I was looking at the walkers today. My daughter is quite tall and when she needs to rest it’s like she needs to put her legs up and find support for her back. In reality she needs to lie down – that would be her best position. When we start with the medications (vasoconstriction) perhaps such a walker would be enough. It’s definitely something to consider.

  4. Wow! I never got this post either, btw! I’m going to try to figure out what is going on there. I’m not surprised by people not getting so-called invisible disabilities, but I would think they’d be nicer to a teen. I live in a city dominated by the morbidly obese (I think only the South is worse)–I really could care less about making fun of them b/c they cost the rest of us money with their self-inflicted health issues. They take all the scooters at crappy Wal-Mart (and the handicaped parking), not that I use any of that, but I think it’s a disgrace as I’ve dealt with aging family, etc. that has been wheelchair-bound. That was in Seattle, where people are fit so lots of parking. Haha. Gee, do paraplegics look sick? So confused! I think you’ll have to come up with a stock line to use with these types. As far as dealing with the medical world, I find they don’t get disabilities at all (how odd!). I struggle with having to get all forms sent in advance so I can hopefully see them in better light to fill them out and they could care less that I’m cold-intolerant in the freezing offices or that I can’t sit (makes my pain worse). I’m lost there. Glad you posted on this as you brought up many good points here. Just keep doing what you’re doing for Genny and yourself–what more can I say? The world just doesn’t get it for the most part.

  5. I’m sorry your daughter has to deal with the ignorance to such an extent. I find myself always pretending to be fine (as best I’m able) when around anyone other than my mom. I wish I was the kind of person who just didn’t care, I admire those people. Those of us with “invisible illnesses”.have to deal with so much misconception and ignorance. I went to a chronic pain support group in our town (I was by far the youngest person there) and one of the first things everyone said after I told my story was; wow, I never think of young people having such medical problems and pain. It seemed to have opened a lot of eyes.

    • It’s probably that you guys have been through so much in terms of pain and so on from such a young age that you are capable of pretending like it’s not so painful. I sometimes wonder if Gen knows the difference. The horror stories started when she was a baby. One day maybe I’ll find the courage to write about them.

      What’s really sad I find is that it’s not because you are so young and so pretty that everything is OK. I think that’s why people are so blindfolded in that regard. In reality, it’s like a part of your life has been stolen way before it even started. But I suppose life must go on and we must find a way to survive and just make the best of every day. Every good day is a beautiful day. 🙂

  6. Oh my god. May they rot in hell. Seriously. That’s some low down rotten. My coworkers may be a little clueless (thanks to the surge in learning disability diagnoses in young people, they’re used to dealing with people who have relatively stable, not physiology-health related disabilities) but I can guarantee you that none of them would do something like what those two losers did.

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