Disability and Travel
Life is good and that’s the way it should be. It has been a friggin’ rollercoaster forever. I have so many blogs started that I just never finished. But HERE I AM!!! I missed y’all a whole lot! I have so much to chat with ya about!
For Halloween Bear and I took an adventure to Jacksonville, Florida.
Our main reasoning for the journey was because Bear was interested in going to a haunted corn maze. Upon arrival, I was pretty underwhelmed, but I’m pretty underwhelmed by most things, we were instructed the highlights of the maze were not visible from where we were and to reach the maze, located about a mile away, we absolutely HAD to get on a hayride, which wasn’t accessible. When I don’t understand something my first response is to lose my temper and make you question your life. I simply did not understand any part of this. In retrospect, I don’t remember looking to see if it was a wheelchair accessible event. I have for 28 years so pretty much absofuckingpositive I did but I don’t give a fuck. It was a public event. It should have been available to ALLL. Not some. Every time this occurs some walkie witnessing the event will ask, “Did you look online to make sure the event was accessible? Dude, that sucks.”“Dude, did you look online to see if they allowed your brand of shirt on the premises tonight?” I have been looking online for accessibility since before you were born. Go suck a troll because what you are doing now is equally beneficial. The overall wearing manager offered a make-shift ramp constructed of one flimsy plywood sheet, my guess, it was ¾ of an inch thick, in this walkie manager’s wonderous utopian mind this “ramp” would be able to support me and my chair once to get on the hayride, then it would be able to support Bear and his chair to get on, then I have no idea how plywood works, but now it is already stressed and the manager wants to take it for a bumpy journey, say it survives that venture; now we have to enter the corn maze. I have to successfully get off then Bear and his chair, THEN we have to load back on the hayride to go home. Plywood is not that freakin’ trustworthy. One person with a wheelchair I could comprehend but no, it’s a bad idea. Who thinks of this shit?
We have a wheelchair van that I hate with a fiery passion. It has an electric lift that breaks every two days. Never buy an electric lift, it makes absolutely 0 sense if manual is an option. Our van was at the site of the maze so common sense says, “Why not load in the van and go back to the corn maze?”
Only employees are allowed to drive on the premises because they don’t want any children getting hurt.
Well, motherfucker, that’s how we are going to do it so let’s get it done.
Luckily, Bear did whatever Bear does and my idea was put in place and everything was well and no one was harmed. The maze was well-worth the ableism and stress.
My parents came down for that wonderful holiday where we say what were grateful for, when in truth we should be saying it every day so we shouldn’t really need to make a special day of it, while we commemorate obesity and gluttony and at the end of it will just be wasteful.
Between the end of October and mid-January I have come to be extremely grateful every hour of each day and to stay extremely aware at all times. Time has told me everything that is bad will occur at this time.
DO NOT RELAX.
Thanksgiving dinner was hosted at Bear’s bother’s home, which is across from a hospital and I could see the hospital staring at me and mocking me from our arrival until we departed; Telling me how many people were there missing their families and reminding me of holidays past. Mocking hospitals are hard to ignore. All my Chakras have been blocked for months now and I could not stay in the present that whole day.
I like to enjoy every minute of every day and make it somehow the best ever and I don’t like people fucking with that.
The week of Christmas the state which pays for our PA services informed us that because of a clerical error our services would be put on hold. This means they would no longer be paying our caregivers. I didn’t understand it and we had 5 tightly budgeted trips planned to cure my insufferable boredom/depression so I threatened everyone and told them how badly they did their job. Bear was his Superman self figured out a plan. We, unfortunately did lose one PA and because of this cannot hire a new one right now. I hate having two PAs. I find it ridiculous, I find me and Ryan living in one space far too many people: My daddy always said, “Only one cook in the Kitchen” but it is a necessity I have come to realize. These days, I feel I still enjoy every minute of the day, but I can’t wait for it to be over so we can be closer to getting another PA and I fucking hate myself for wishing the day away. I don’t have the luxury of wishing days away, so I try to make a point not to but recently I have.
For our holiday trip this year Bear flew for the first time! Right after Thanksgiving Ryan and I took a big jet plane with my mom and dad to my beautiful hometown, Chicago. It was the worst flight. It was way too early for me and it was storming from Atlanta to Chicago. Our landing was barely a landing and more of a, “we just hit the ground” Ry was a big fan of the flight. Not a big fan of Chicago in winter. We did get in a pretty big fight because he was cold. No one cares if your cold in Chicago You can say it all you want. You can feel it. But ain’t nobody care. We are gonna see Christkindlmarket and get a milkshake if you keep it up. Turns out I need to be more understanding. I’m working on this. I’m cold every second of the day, do I bitch about it?
Probably…Probably…but I saw Kirsten!
On the way home to Georgia, Bear and I flew solo. I was anxious and was completely aware of my body in my chair for the hour we sat in the terminal. I hate strangers transferring me. I never cared until I left Chicago. I remember one-time in the dead of winter, we had to make a documentary for my friend and this strange man who gave off the worst vibes and was smoking a cigar had to carry me up 3 flights of outdoor stairs.
But I just don’t like people transferring me now. To enter an airplane seat, strangers must transfer you. All went well with the transfers. Ry and I were able to sit next to each other, which made the trip. The airline first told us we could not sit together then we did and it was fabulous! I have flown many times with other abled-bodied people and myself. If you haven’t yet, you should. It was a lot better than Ry and I expected having two wheelchairs on one flight! No wheelchairs were broken either! My biggest fear in flying is having my wheelchair break at my vacation destination. Be sure if you travel by air to specify how truly important wheelchairs are… do whatever you can to make the baggage guy’s job easier… Ask them to not stack anything on the wheelchair, especially the joystick…
My goal in life, which I have somehow found Bear in this infinite universe and he has much the same goal, which proves how much the universe is on your side but now it is our goal to travel. After almost 30 years we almost have our lives figured out enough to start traveling. By no means is any shit figured out, but I don’t cry every day. Like I said we are both almost thirty and when that happens a married couple accumulates so much material junk. We have two knife blocks on the counter right now. For some strange reason I find all this “junk” is keeping us from reaching our goal. I absolutely hate Georgia, as you know because it’s too big. Our apartment is disgustingly big. It’s so unnecessary. I think it’s the smallest thing Georgia has to offer. When you say “small home” in Georgia it’s still a mansion and “no mayo” to them means a little. I gained so much butter and mayo weight when I first came to Georgia. Don’t eat here. I loved my really crappy Chicago apart which had one bedroom. I shared with some bro and had to sleep in the living room. It was so homey and safe. Everything could be seen from anywhere at all times. No mean people could hide in there and no junk could accumulate. I want a place like that back or else I buy junk and worry and stress about bad men instead of doing something creative with my imagination.
Just in case y’all thought no one else was fed up with the media and it was just me and possibly you our friend, Melissa Sanchez, who was able to make the trek from California to Chicago is a fan of CMT’s Nashville and she shared with us her thoughts on the foray of events that is happening.
Hollywood has come a long way in recent years when it comes to representingpeople with disabilities in film, TV and stage. Whether it’s creating more storylines onmainstream shows for those who are differently abled (i.e. Superstore, Glee, SpringAwakening) or actually casting disabled actors in lead and supporting roles (American Horror Story’s Jamie Brewer has Down Syndrome, while Speechless’Micah Fowler and Breaking Bad’s RJ Mitte both have Cerebral Palsy). While a onceoverlooked community is now getting the opportunities they deserve, there stillseems to be a bit of division in Hollywood on how disabled characters are portrayed.1. We are the inspiration porn, we are pitied, helpless characters everyone feelssympathy for.or
2. We are actually represented as normal human beings with real feelings andproblems just likeeveryone else. We just happen to have a disability – but we don’t let that stop usfrom living our lives.The latter is rare.Which brings me to the show Nashville. Spending its first four seasons on ABCbefore being picked up by CMT in its current 5th season, the show focuses onfictional country musicians both popular and up and coming, trying to make it in thecountry capitol of the world. Starring Connie Britton (Friday Night Lights) and HaydenPanettiere (Heroes), the show has seen its share of cheating, addiction, and comingout of the closet storylines like most primetime soaps. This current season opens upfollowing last season’s cliffhanger where Panettiere’s character, Juliet, is involved in afatal plane crash. This new season’s story line has me a little irritated about howJuliet handles the aftermath of her accident. All Juliet does is complain how she can’tdo anything while being stuck in a wheelchair, how she’s not “normal”, and that shecan’t go out in public like “this”. Not to mention how useless she thinks she is as awoman in a wheelchair raising a baby. While it can be challenging, I know lots ofwomen with disabilities in wheelchairs that raise children just fine.The first episode, “The Wayfaring Stranger” picks up with the young singer left for deadin a field of wreckage when she is saved by a passerby. She is the only survivor ofthe accident and we later find out her injuries include current partial paralyzation ofher lower body (which the doctor says may be temporary ) due to shatteringvertebrates, which is currently leaving her wheelchair bound. After surviving such atraumatic experience and losing sensation in your legs anyone would be terrified,that’s understandable. So I get Juliet’s bad attitude towards the situation. Whatbothers me is the way the writers are handling the storyline of Juliet’s new disability.We hear the cliche “I know you’re gonna walk again”, “You’re so brave”, and howthey thinks she’s a miracle from various characters throughout the episodes. Laterher estranged husband Avery (Jonathan Jackson) takes her to the accident site perher request and while pushing in the fields her chair gets stuck to which Julietexclaims “Dammit.” Sure all of us in the two-wheel community have been there, butinstead of our Dammit-stupid-wheel-got-stuck-again swearing, Juliet’s tone is a moreirate Dammit-I’m-useless-in-this-thing statement. On that note, Juliet is supposed tobe a multi-million dollar country star. Couldn’t they have gotten her a better lookingwheelchair than that rinky dink cheap hospital chair she’s rolling around in?!Seriously.In, “Back in Baby’s Arms”, the second episode, we see Juliet trying to feed her babyCadence to which the child does not respond. Avery offers advice on how to feed herbut Juliet instead takes her incompetence as a mother and seems to blame it on thefact that she is now in a wheelchair, saying “You just do it. I’m useless” while rollingaway. Avery then tells her she is not useless, only for her to turn around and exclaim“Well I might as well be! How am I supposed to raise a daughter like this?!” Like thisof course meaning in a wheelchair. Her husband assures her she is not alone and hewill be by her side to which she replies “Yeah I have you for now. How long are you
gonna want to take care of a crippled and a baby?” I’m sorry but there’s nothing Ihate more than the words “crippled” and “retarded”, especially when it is being usedon a national platform. It is derogatory. Moving on, Juliet asks Avery to look for thewoman who saved her because she can’t go out (because you know, she’s in awheelchair and that’s embarrassing and all); she can’t let people see her like this.Later Juliet goes to a church where she believes the woman who saved her is aparishioner. We see a Pastor come out to Juliet’s van as she tells him “Thank you forcoming out here. Getting in and out of this car is an ordeal.” Gurrrl, you have awheelchair accessible van with a ramp! That is not an ordeal. Most of us wheelchairusers would kill for an accessible car to make our lives easier! Stop complaining.The latest episode, “Let’s Put It Back Together Again”, we see Juliet struggling moreadapting to her new life. While talking to Avery she drops something and is unable topick it up from her chair in which she becomes frustrated. She is also challengedwith the obstacle of stairs, aka to the rest of the disabled community a place notbeing ADA compliant..A few scenes later and upset she tells Avery “Tell me this iswhat you imagined? Pushing me around for the rest of my life in a wheelchair like asack of potatoes?!” She goes on saying both her and her husband would be betteroff if she would have died in that plane crash, hinting life in a chair is a far worse fate.The next scene: Juliet suddenly gets sensation back in her legs after her baby peeson her. I mean really CMT? A 3-story arc?! Hey I became paralyzed for threeepisodes but now i’m getting feeling back in my legs and all better. It doesn’t worklike that. I hope that’s not the case and from what I’ve heard Panettiere’s characterwon’t be getting out of that wheelchair anytime soon. Still, I hope as the seasoncontinues the cringeworthy cliched storyline of being disabled gets better. Theepisode ends with Juliet singing with hope in her voice the phrase ”I’m on my way”(as to say to recovery) while playing the keyboard.I as a disabled woman in a wheelchair myself am disappointed so far in the directionCMT is taking the character of Juliet. It’s sending the message that people inwheelchairs see themselves as freakish and good for nothing, while others see themas miracles and inspiration. Seeing as I’ve been watching this show from the verybeginning I hope CMT takes into consideration how the disabled community can takeoffense to this and hopefully revise the storyline by shying away from thestereotypical portrayal of persons with disabilities. We are a community of worldclass athletes, NASA engineers, journalists who write for the Times, surgeons,artists, musicians and so much more. Again, I understand this character acquires adisability (whether it will be temporary or stays permanent we shall see), but I ask thewriters and CMT to do better research on the lives of those living with disabilities, orhere’s a crazy idea, maybe even have an actual person with a disability as aconsultant?! So even if the character of Juliet permanently has to use wheelchairin the show, there’s no reason why she can’t still get back out on that stage andcontinue to be a country superstar. Now that’s something I would like to see