Set the scene: Two older women, disabled, traveling together out of state for a weekend of debauchery - well, if you're into costuming, fabrics and classes on the same, yarrr matey.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
My friend Margaret is 72, has emphysema and diabetes, high blood pressure, recent knee surgery, allergic to dog dander, and a few other things going on. Her husband has always taken care of her, and she's always traveled with him. This is the first time since she has been tied to oxygen and needing to use a wheelchair that she's traveled without him.
I, of course, have a hearing disability, which is made obvious by my service dog, Itzl. Who is, also obviously, a dog, and therefore has dog dander. Margaret, bless her, knew this going in and took a course of allergy shots before we left and had extra inhaler medication in case his dander bothered her too much.
I bathed and groomed and combed him out so he was as danderless as possible.
I don't talk about it a lot, but I also have knees that were damaged in a car accident (only a problem when climbing up and down stairs, lifting or carrying heavy things, or pushing anything) and I lost 80% of the use of my right hand after hand surgery. I had 50% use before the surgery, and knew going in that it might decrease the use of my hand, but it did what I needed the surgery to do - it eliminated the agony that shot through my hand and up my arm every time I handled anything that vibrated - the steering wheel of the car, the lawn mower, the edger and trimmer, the sewing machines, the shredders, the electric shears...I use a lot of tools and equipment that vibrate.
We made for an interesting trio, taking this trip with just the three of us: me, Itzl, and Margaret.
When you're disabled, you don't just pack a bag and take off. You have to
1. pre-plan everything,
2. pre-pack and re-pack to make sure everything fits and the essentials are within easy reach - or at least easy to get to without unpacking the entire car -
3. make advance arrangements for rest stops, fuel stops, food stops, and Itzl potty stops - and sadly, none of the places provided all four amenities - we could get any two out of the four, but not all four, which meant more stops,
4. make sure all the places along the way understand exactly what you need - and you have to pay more for practically everything
5. make sure you have sufficient meds packed for everything and plenty of oxygen tanks to refill and trade out as needed
6. make sure there's a pharmacy near-by that the doctor can call emergency prescriptions to
7. know where and how to get to the nearest emergency rooms along the route, along with names of doctors recommended by the primary care doctor
8. make sure these emergency rooms and doctors are in network for insurance and get pre-approval for the ones who weren't - just in case.
Nothing is impulsive - not even the meals we were going to eat or the rest stops we were going to take along the way.
In Margaret's case, we also had to call the oxygen company to make sure an oxygen generator was installed and functioning in the room, and notify the hotel we would be accompanied by a service dog, so we needed a handicapped room that gave us access to an area where I could toilet Itzl. We had to make sure there was a place where she could plug in her oxygen to prolong the power in the tank (they don't make power converters for oxygen that plug into a cigarette lighter in a car - her van has a special modification for the oxygen) along the route.
We took my Toyota because her husband is huge - he can't pack himself into my tiny Toyota. We couldn't trade vehicles for the trip.
Packing was - interesting. We needed to fit Margaret's manual wheelchair into my little Toyota because there's no way her power chair and it's charger and ramp would fit in - those, combined, weighed almost as much as my car. And then we needed to pack the ice chest with the insulin and food in it, and the spare oxygen tanks, where Margaret could reach them while I drove, plus her bag of meds. We had to find a place for Itzl to ride because he couldn't use his special car seat - Margaret needed to sit there and the back seat was packed full. He ended up riding the whole trip in his carry pouch, tucked off to one side under my arm.
And then we had our sewing machines, our costumes, and our regular luggage, and my cane to fit in.
We were going to a Costumer's Event - with classes on costuming and a full costume party. It was called a Costumer's Lost Weekend because we could dress in any costume from any time period - including our conception of the future. The concept was that we were lost in time. The Saturday Night party was a Mourning Party, such as the Victorians would have to mourn the departed. Most people therefore chose Victorian costumes. We packed about 4 full costumes each - even Itzl.
Itzl had his very own suitcase of things and needed a wheeled suitcase for it all. He had his top hats (yes, plural), his goggles, his safari suit and pith helmet, his skeleton suit (to match my Dia de los Meurtos mourning costume), his "smoking" jacket, his dress ballroom suit, his monkey bed, his blankie, his food and water dishes, his food, his bottled water, his steampunk booties, his sash with his accessories, his space suit and helmet, and his assorted carry pouches along with his potty pads and grooming supplies.
All in my tiny Toyota.
The trip itself was straightforward. I'd already marked all the rest stops along the way that had nice handicapped facilities. Some of them had handicapped facilities but they weren't nice and weren't easy for Margaret to use. I already knew which ones had decent toileting facilities for Itzl, and which ones had vending machines or a close restaurant we could use for snacks and rests along the way.
We hit our first set-back at the hotel registration desk.
Even though we reserved the room a month in advance, we discovered on arrival that we weren't in a handicapped room, as requested and as pre-arranged. The oxygen generator was at the hotel and set up, but it was in a regular room which didn't have space for the wheelchair to move around and the bathroom was less than stellar for a disabled woman with mobility issues.
We asked about changing rooms, and discovered the hotel was filled - with two different (and apparently hostile to one another) evangelical Christian groups, 3 high school reunions, and our costuming and sewing group. They'd given the handicapped rooms to people in the evangelical groups and there were none available any more.
Margaret was the only person in the hotel in a wheelchair. The people who got the handicapped rooms did not have mobility issues. They just had children, and felt that made them disabled.
The other bad things about the room we were given is that it was far, far away from the conference room we were using and far, far away from the elevators, and far, far away from anywhere suitable to toilet Itzl.
The final bad thing is that the hotel had the sort of carpeting that clung to the wheels of the wheelchair, making pushing it a challenge under the best of circumstances. There was no way Margaret could push the chair herself, it was beyond her strength and lung capacity. My knees were acting up a bit, so pushing her was not easy, but we managed. Actually, pushing her meant I could use the wheelchair in place of a cane, so other than building up blisters on my hands, it wasn't so bad.
I've stayed in this hotel before and had to write management about their treatment of people with service dogs. At least that was remedied - other than the fact that they stuck us so far away from suitable toileting places, they didn't cause the problems they had several years earlier.
It looks like I'd have to have a talk about pre-reserving handicapped rooms and having them give the rooms away to people who were not handicapped.
And let me tell you - while it was wrong on the hotel's part to give out the handicapped rooms when one had been reserved in advance, the Christian evangelicals who got the handicapped rooms were so incredibly rude about it, and that was even more wrong. They gloated about having the handicapped rooms loudly whenever they saw us. They seemed to think having children trumped being in a wheelchair for using the handicap accessible rooms. They made a point of stopping us and telling us that handicap rooms were on a "first come" basis and we had no right to boot them out of their room.
Considering they weren't "booted out" but merely politely asked by the hotel staff if they'd consider changing rooms, that was certainly not true.
We did our best to smile politely at them and carry on. I had it easier, since most of the taunters were either the children or the mothers and they all had shrill voices that hovered at or out of my hearing range. Margaret's hearing is excellent and she had to hear it all. I know she didn't tell me the half of what they were saying. She just shook her head at their attitude.
They gave a very bad name to Christians, and if they were my only exposure to Christians, I'd not like Christianity at all - rude, belligerent, selfish, obstructive, violent (not towards us, but they would punch one another, throw things, break things - I saw a group of teens kick and punch an ice machine until it broke one of the legs off - I took pictures and reported it to the hotel staff). Good thing I know a lot of decent Christians, including Margaret.
Since I'd used this hotel several times before, I was familiar with its layout, and knew which elevators would get us to what locations quickly. I also knew ways to circumvent the bulk of the evangelicals meeting there, so I'd push Margaret through the hidden ways once I caught on that those people would not be nice.
Once we connected with our group of people, it was much better. We knew most of them, and they knew us.
This is Margaret:
Margaret is holding up the superhero vacuum-formed arm so I can photograph the inside in the class on making vacuum-formed accessories.
Itzl dressed in his skeleton costume for the Mourning Party:
He wore his goggles and top hat for most of the Lost Weekend:
This is us at the Sunday Brunch before we departed:
And these are all the people who were still costumed just before we left:
The trip back home was also uneventful.
Unpacking the car was kind of amazing. I felt like I'd driven a clown car, where one clown after another kept emerging - far more than could possibly fit in. One bag and package after another came out of the car, one oxygen tank after another, and then - the wheelchair!
I'm surprised the wheelchair fit in so well at all.
And we plan to do this again.
We managed without her husband. This was a test weekend and now that we know we can handle it, we will do it again. It's good for Margaret to get an occasional break from her husband and he could use the respite, too.