Saturday, December 28, 2019

Rebel Badass Part 2

Much to my dismay and disappointment, however, Janice decided that I should postpone my evaluation/jump until the following week so that she and John could consult with the parachute company about people with Cerebral Palsy. (What a company who made and sold parachutes could know about Cerebral Palsy was beyond my imagination. People with C.P. are like snowflakes, in that each person’s condition is uniquely different from one another – sometimes vastly so!)   And, once again, Janice said that even when I did come in for my evaluation next week, she, John and another instructor would all be there, and it still might not that I would actually get to jump.  Also, even though I had signed a waiver saying I wouldn’t sue for injury or death, John still had the last say because he absolutely didn’t want me to sue for damages or negligence.

With Brittainy’s assistance, I attempted to point out to Janice how unfair and discriminatory she was being towards me. I had signed the same waiver as any other off their customers and I knew all of the risks - what was so different about me? And, why did I need three people to evaluate my abilities?  Couldn’t Ross just do it by himself?  Did other people have to jump through so many hoops?

And that’s when I heard Janice say to Megan, “I don’t like using the word ‘normal’, but ….”

It was cringe worthy. Whenever people say that they don’t want to say something or don’t want to sound mean, or crass, or insensitive – it actually means they do want to do exactly that!  In essence, Janice was implying, and not so subtly I may add, that she thought that I wasn’t normal … that I was, in fact, abnormal.  What exactly do the words “normal” and “abnormal” mean?  Who’s to say what’s normal and what’s abnormal?  These terms are very vague, and yet can be extremely hurtful. Believe me, I know!  Those words are powerful enough to lift you up or take you down, to open doors or to have them be closed on you.

In the end, everyone was getting tired and emotions were running high, so I ended up conceding that I would go back to Skydiving Innisville the following week. An exact date had yet to be confirmed. 

However, that same night, Brittainy came into my room and told me that she had just seen not one but two videos on the Skydiving Innisville Instagram page.  The videos showed two separate individuals with totally different disabilities skydiving at their facility! One man had lost his sight and hearing due to contracting meningitis. (His video showed Ross communicating with him by pressing ASL letters onto his open palm.  Incredible!) The other man had been paralyzed from the waist down due to an accident.  He too was accommodated in his tandem jump with no problem. In both videos the men seemed thrilled with the experience, and Ross seemed truly happy to have been able to facilitate the jumps.

I felt angry and confused. If these two people were allowed to jump, why wasn’t I? It didn’t make any sense to me!

During the next few weeks, I emailed back and forth with Janice, and had another three-way conference call with her as well.

When I broached the subject of the two men with different types of disabilities being able to jump at their facility, Janice mumbled something about the fact that she and John hadn’t been there on those particular days.  That made me think, Hmmm, so would things have been totally different if Ross had been there and she hadn’t? Would I have been able to do a tandem jump, just like those two men had? Also, in our email correspondence Janice always CC’d herself, John, occasionally Megan, and me – but never Ross, the guy who specializes in these kinds of jumps and who said that he was pretty sure there would be no problem tandem jumping with me!

For my part in this correspondence, I had tried to assure her that I was no delicate little flower. I explained that I had been on many, many types of roller coaster rides and other types of rides without any damage to myself. I told her about the time when I was in a wheelchair race at age twenty-nine.  I accidentally fell out of my chair onto asphalt and broke my nose – I still stayed for the picnic and had a hotdog before going to the hospital. And then there was that time when I was in the bathroom and my commode/shower chair tipped over as I was reaching for something that was a tad beyond my reach. My head hit the hard floor – wham! – but I was laughing when Rob pulled me up.   My head was fine but the chair had a crack in it.  Rob remarked: “Anne, your head is as hard as a rock!” (Rob always used to tease me about my hard head.  If I accidentally whacked my head on a door or wall or something, he’d say, “Careful, Anne. You don’t want to put a hole in that!”)

I also explained to Janice that I hadn’t been able to bring my own power wheelchair to Skydiving Innisville because it just wouldn’t have been possible to fit it into Megan’s small car. Instead, we brought Megan’s sister’s old manual wheelchair, the one she used when she was a kid.  The chair was old, a bit worn out, much lower to the ground than my power wheelchair.  Plus, the seat was very narrow and I had to put cushions behind my back in order to feel comfortable.   

(Yes, yes, I can see a glimpse from Janice’s point of view. I probably did look smaller than usual and not as capable as I usually do. And yet, her judgment was so quick and cruel, and there was no actual physical testing to let me demonstrate my abilities or endurance!)

But - and I tried my damnedest to explain this to Janice - this was not at all how I presented myself to the world on a daily basis! Usually I zoom around the city doing banking, shopping, seeing my grief counsellor bi-weekly, meeting friends for dinner, and selling my artwork at the St. Lawrence Market. 

At home, in my daily routine, with some assistance, I can get in and out of bed myself. Getting dressed, I can lift my body up myself so that my PSWs are able to pull my leggings or tights up or down. Like some kind of well coordinated dance, I move my head; arms; and torso, while my PSWs pull, yank; tug; and straighten my clothes 

I am not a limp doll – I can move my own body any way I want.  I just need help with the fine-tuning of things, that’s all. I tried to explain all of this to Janice, but her answer was always the same.  She’d talk to John and the parachute company and then get back to me about having me come back in.
I sent her these three videos of three different people who had Cerebral Palsy - all of whom went skydiving without any kind of difficulty at all!  I had hoped that these videos would make Janice see things differently and open up her mind to the possibility of allowing me to skydive.

They didn’t.  

After three weeks of corresponding with Janice, I became frustrated by being put off from setting a definite date. Occasionally, John wrote me apologetic emails explaining that they were very busy doing competitions and having skydiving tryouts at the CNE. They hadn’t forgotten about me, he assured me, and were still discussing my “situation” with the manufacturer of the parachutes. 
Fed up, I emailed the company, instructing them to to either give me a definite date or give me a full refund. 

Janice didn’t like this.  In a very defensive email, she wrote back to me and said that 1) She didn’t appreciate the tone of my resent emails. (I guess my feelings of frustration and resentment somehow seeped through, although I did my best to reign them in.)  2)  She thought that she had spent way too much time on my case already. (Did Janice treat all of her customers as if their individual accommodations were a nuisance to her?)

On the other hand, Janice told me that she was still in communication with the parachute company. She didn’t give me any details about how that was going, though. She also suggested that I have my doctor write a note saying that I was fit enough to go tandem skydiving. That sounded fairly reasonable, until she added that she also wanted to speak to my doctor about my condition.  That for me, was going too far - it was an invasion of privacy! Hadn’t she heard of doctor/patient confidentiality? 

Wanting to cool down before I wrote back to Janice, I decided to try a different skydiving company located just outside of Niagara Falls. My hopes were high because a friend of mine (Samantha) who, like me, has Cerebral Palsy, had been able to go tandem skydiving with this company.  (I shall call them Outside Niagara Falls.) 

Initially, just like me with Skydiving Innisville, the manager of Outside Niagara Falls took one look at Samantha and told her that she wouldn’t be able to jump.  (Samantha, I should explain, is a bigger, more muscular person than I am, and uses a manual wheelchair not one that is motorized. She can also communicate verbally and has finer dexterity skills than I do. So, the manager of Outside Niagara Falls seemed extremely unreasonable.) 

Fortunately for Samantha, the instructor (let’s call him Steve) was there and said that it would be no problem for him to go tandem skydiving with him. Like Ross, Steve had had a lot of experience in assisting people with a wide range of different types of disabilities to skydive.
And Steve had been right m his estimation of Samantha’s capability. There had been no problem, no complication, and no kind of injury at all.

So, I had anticipated that my experience with the Outside Niagara Falls skydiving company would be similar to that of my friend Samantha’s.  Perhaps a tad too optimistic, I had thought that the owner of the company would have learned not to pre-judge someone just because they are in a wheelchair.   I also expected that Steve would have been as supportive of my desire to jump as he had been with Samantha.

I was wrong on both accounts.

Again, upon seeing me for a mere ten seconds the manager (let’s call her Kathleen) said no, no it’s impossible for her to jump. (She addressed her “evaluation” to Megan, not to me, which put my back up right away!)

Through Megan, I told Kathleen to please talk directly to me.  Once I had her attention (although periodically she would revert back to speaking to Megan about me in the third person), I explained that my friend Samantha had recommended their company to me because she had jumped with them before and she’d had such an incredible, positive experience. Until I showed Kathleen a video of Samantha actually jumping with Steve, though, she denied that another person in a wheelchair had ever used their services. 

In the end, Kathleen introduced me to Steve, and the three of us discussed the situation at hand.  Much to my dismay, Steve was giving me the same pitiful, dismissive glances that I had been getting from Kathleen since I had arrived. I knew that part of the problem was that, once again, I was sitting in Megan’s sister’s old manual wheelchair, not my own power wheelchair.  To Kathleen and Steve, I probably looked like a weak, pathetic creature instead of a strong, confident woman.

Kathleen and Steve had probably never met anyone who had my type of Cerebral Palsy before either. And that was, for me, the crux of the matter.  If they were ignorant about the many, many, MANY variations of Cerebral Palsy, how could they point at me and claim with the utmost certainty that I would be unable to go tandem skydiving?

I was never given any type of test regarding my strength and/or endurance. I would have appreciated a chance to demonstrate my abilities! Instead they supposed that I wouldn’t be able to handle the free fall because I was so delicate. Incredibly, they also implied probably had osteoporosis too.  (Osteoporosis? WTF! Where did that idea come from?!)  When I tried to explain how absolutely ridiculous that was, because I’m constantly banging my arms and legs on tables and walls etc at home without injuring myself, Kathleen and Steve simply sat there humouring me.  They didn’t think that I knew what I was talking about.  However, I guess I wore them down eventually because they decided that if I got a doctor’s note saying I was fit and didn’t have osteoporosis Steve would personally help me jump.

Bully for them!

I guess the worst experience I had at the Outside Niagara Falls company was when Kathleen was trying her darnedest to dissuade me from going tandem skydiving.  At one point, she pulled out the handbook of the Canadian Sports Parachute Association and read out to me that according to the rules it states that skydiving companies like theirs have the right to refuse clients based upon "mental or physical deformity.” I felt like leaping out of the wheelchair and giving her a smack that she’d never forget!   The way she said those words with such calmness made me want to vomit. How could she not understand how that ugly word deformity may be hurtful to someone like me? That one single word carried the weight of a thousand tons of systematic ableist abuse with it.  Years upon years of hurtful memories came flooding back into my mind.

Deformity.  What a vague and yet an extremely hurtful word. Is a large nose a deformity? Being too tall or too short, overweight or underweight – could you call these things deformities?  Some may say that a mole upon a person’s face a deformity.  And yet, Marilyn Monroe had one and they called it a beauty mark.

Is someone who is lacking in empathy for another person somehow deformed?

However, I’m getting off track. A week before the note from my doctor was due, Kathleen called me and told me that she and ten instructors (who had never seen, met, or given me any kind of physical evaluation) had decided not to give me the opportunity to jump.  When I asked why, she explained that she thought I was too delicate to go through the free fall.  Feeling utterly exasperated and fed up with repeating the same arguments re my ability; agility; and endurance, I mentioned that at least Skydiving Innisville was still consulting with a parachute company to figure out a way to accommodate my special needs.  Kathleen was upset about this last comment and told me that she wasn’t willing to consider spending $20,000 on such things.  I told her that perhaps she should read up on Bill 47: The Accessibility for Ontarians with Disabilities Act. The section called “accessible customer service standard” may be of particular interest to her.

My friend Jen recently shot a video of me in order to show to both skydiving companies once and for all just how strong and agile I actually am. It’s called Anne Abbott is Strong! My friends and family believe in me because they know what I am capable of, while those skydiving people have no idea! 

Another friend of mine sent me a video of a man skydiving on his 100th birthday!

I just found a video of a 96 year old woman who skydived too! 

If they can do it, then surely I can too! Both of these brilliant people had no problem with the sudden jerk of free fall, and they were both of the age where osteoporosis is most prevalent.

I’m going to show these videos to both skydiving companies and see what they have to say. Probably more BS, but I’m curious anyway. 

I have fantastic news, though. At the end of September, I found a company located in Cincinnati, Ohio, that encourages people with disabilities to go skydiving. In fact, you have to get a doctor’s note to prove you have a disability, and they’ll give you your first jump free!

I had booked my trip right away but I had an infection in one of my teeth and the antibiotics that the dentist gave me led to me getting C-Difficile, a gut problem. Which is why I postponed my trip and is why I haven’t written in awhile. You know me, though, dear readers, I’m not one to give up! I’m going to go to Cincinnati to skydive in the spring. Woo-hoo!
Before then, I’m going to England for a week in January. 

Life is made to be lived and enjoyed…especially by a rebel badass like me!

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