Disabled in Trinidad

I’m here, I’m here…I really am!

I went home for carnival this year. Back in 2021, I decided that that there was no way that I was going to miss the first carnival after a 2-year hiatus because of the ‘vid. I’m sure that my friends got tired of hearing me explain that I just knew that Trinidad, the land mass, was going to sink because of how many people were going to be on it and if Trinidad was going down, I had to be there to go down with it! I was there for 2 weeks from the middle of February and oh what a time!

I’ve been going home during all stages of my disability, and I always have to do my due diligence w.r.t. where I can go, what I can comfortably do etc. – I love my country, I love going home but it really is not an ideal place for a handicapped person. I was also home in 2020 for carnival and that schedule of fetes plus J’ouvert worked so I figured that I’d stick with the same this time around too. One of the fetes was going to be a new experience but ‘Jel told me that it was held in the stadium, so I knew that was okay because the stadium is flat. Now, I have to admit that the wheelchair service and accommodations in Piarco, the airport, are second to none in my opinion; at least I’ve never had a bad experience. In fact, when I travel within the states, I’m on my own the entire time (from the time I enter the airport to the time I leave the next airport – don’t get me wrong, it suits me just fine) and I’m never escorted anywhere. In those instances, if I need help, it’s actually easier and makes more sense to ask another passenger than the wheelchair people. In Piarco, I’m put in a wheelchair when I arrive, and they send my scooter to baggage claim so I’m with someone at all times and I eh go lie, it really helps going thru the entire arrival process after flying internationally. It’s a BESS experience. When you leave the Piarco walls, however, all bets are off.

When I was growing up, I took taxis or maxitaxis whenever I needed to use public transportation. Luckily for me these days, there are many other options so most times in recent years, I’ve hired drivers to get where I needed to be. This year, the person was a friend of the family, so he had somewhat of an idea of what he’d have to deal with beforehand (we’d never met but my mother gave him the rundown). I must say though that I’ve never had a bad experience with anyone I’d used prior…I always tell them at the time we discuss where I’m going etc. and everyone has been helpful and cool about having to haul the scooter in and out their cars. I haven’t used the Trini version of Uber yet although apparently, one big difference is that riders do not see the make/model of the car in the app. I believe that after you are paired with a driver, they call to give you that information which means that if I ever use it, I need to be with someone who lives there because I may not recognise the make of the car to make a judgment call about whether the scooter will fit in the trunk. All in all, small ting!

The first few times I went down with my scooter, a lot of people stared at me like I was an extra-terrestrial being. I mean STARE and STARE HARD. I remember one time there were people looking, staring, bending the corner to look and see what I was doing. It never bothered me, I never felt self-conscious, and I certainly never let it stop me from doing what I wanted to; in fact, I remember thinking that it was quite funny. I don’t think that anyone meant any harm; they were just curious and one of the reasons is that seeing a disabled person going about their business and doing their thing is just not something you see happening at home. I certainly don’t have the authority to say that we are second class citizens but maybe we are a forgotten/unthought of bunch? One of my Facebook friends who is in a chair living in Trinidad said that the disabled population just isn’t visible, whether by choice or not. The infrastructure also doesn’t lend itself to be accommodating in a lot of instances. Just before I went down, I saw pics and reels of a new restaurant; the food looked delicious, and I definitely hoped to try it when I landed. Yanz was down there before me and she went to scope it out. Well suffice it to say that I scratched it off my list; it was small, tight (not very Optimus friendly) and included a step up to enter. At one of the parties, there were 2 levels and we decided to party on the bottom level. Luckily I had one of my personal elevators because there was no ramp and we had to go down 4 steps (I have an “elite” subset of friends who religiously pick me up and take me up and down steps if necessary whom I call my personal elevators :-)). I always feel nervous for them even though this is normelnormel if we go somewhere and have to negotiate steps. Well, in this fete, for the first time in however many years, J missed the last step and tripped. I have NO idea how he did that but managed to stay upright and not drop me…but somehow, he did! and the story ends here. I must say that on this trip when I went to the grocery with my mother, not a soul paid me any mind (at least, not that I noticed).

The restrooms at these fetes and on the road is another thing that I always need to think about. At the fetes that I attend, picture 3 or 4 trailers of 4 bathroom stalls each. Once again, I used my personal elevator because there were 4 steps to get to the stalls so the attendant let everybody exit and then he took me up. She then kept that trailer off limits to anyone who wasn’t with me. No complaints there at all. Now using the restroom truck J’ouvert morning is a harrowing experience because well…3 or 4 steps. Now, (for anyone who doesn’t know) J’ouvert is a parade through and on the streets of Port of Spain (the capital) so we were constantly on the move. The band had a music truck, a drinks truck and the toilet truck bringing up the rear – constantly on the move. We had to ask the driver to stop the toilet truck for a moment so that J could take me up the steps. I was so nervous because they were narrow and he had to pick me up like a lil child which is not normal at all! We made it though, and then going back down, he went backwards!!! He is my HERO; I’m still in awe at how he did it.

Happy to report that the entire parade route was a non-issue. Of course, I had to be vigilant especially when we pushed off at 4am. I had to keep my eyes open for ankles (I was in the thick of things, in the middle of the crowd) and potholes in minimum light. There was only one close call with the road and I can’t remember the details so all in all it must not have been that bad. One masquerader asked me to take a picture and she told me that she was really happy to see me in the band. Turns out that she is a Physical Therapist and was just really glad to see me out in the band and having a time in spite of my situation. We had a great time on the road and Optimus was a hit with just about everybody in the band (people I knew and those I didn’t) and he survived even though he had to be thoroughly cleaned after. Carnival 2023 is a wrap!

Happy Turkey Day US Fellas

today is thanksgiving day in the US…for the first time in a long long time, I’m doing nothing. I truly hate this weather and even though one can argue that it’s supposed to be a “nice” day, it’s under 70° and in my book, that’s cold (say what u want bout me). I’m actually waiting patiently to fly to FL in the morning…I wish I could bottle up some of the heat and sunshine while I’m there and bring it back.  Steups!!!

anyhoo, yesterday was my MRI. I had to do some rearranging and I couldn’t see Gilbert right after, so I won’t know the results till Dec 19th…in the meantime, I’m hopeful. I still am not experiencing anything new – that’s a lie, the “electric shock down my left leg” that I mentioned before has started back…not as often as before, but it’s happening. One symptom that had stopped after the Lemtrada infusions has also reared its stupid little head but nothing new so that should be an indication of no progression right? Who the hell knows…this is Multiple Sclerosis after all. I thought the MRI was going to last forever cuz I was getting my whole spine AND the brain. Well, it didn’t and I actually was amazed when the tech came and rolled me out the tunnel – I hadn’t even fallen asleep yet! As I was being rolled in though, it occurred to me that I didn’t remember the last time I’d had one done. The machine seemed to be extra loud or maybe my ear plugs weren’t in properly. I’m sure there is a reasonable explanation but I find that for a machine whose one job is taking pictures, it’s too damn loud. It goes thru cycles…sometimes sounding like a jackhammer, a hammer pounding a nail, a door slamming shut…jes crazy shit. Anyway, so 12/19 I’ll go and hear Gilbert’s verdict.

 

 

in other news…I made an adult decision earlier this year that I’m beginning to regret. I decided to go home in July for my high school 30 year reunion – absolutely no regrets there. My regret is that I decided to forgo Carnival 2018…whywhywhy did I do that?!? I just opened an email from the Phuket organisers for next year’s fete and well…SIGH!

making this a short and sweet update; not much else going on in these parts.

hol’ it down.

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