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!

Sunday, September 8, 2019

Rebel Badass Part I

As a child, I used to watch my brother and his friends run and play, and I yearned to join them. I watched super heroes on TV I'd imagine myself fighting the baddies.  In every spy flick or adventure film, I pictured myself in the high speed car chases and doing fast paced self-defense fights. I love the songs:  Born to Be Wild, Don't Stop Me Now, and Tubthumping.

In my heart, I am a rebel badass.  If only other people could keep up with my free-spirited zest for life....

Unfortunately, all of my life people have tried to underestimate my abilities.  People have said things to me, like:

Anne, I know you’re a beautiful teenager, just like any other girl your age, but are you serious about trying to date? What if you get rejected and hurt?

You’re going to go on a roller coaster with your new boyfriend? Are you nuts? What if you fall out of the cart?

You want to live on your own? Are you sure you’ll be able to do that, even with 24 hour attendant care?

Anne, you want to get married? But what if you get divorced? 

You’re pregnant??? When are you having the abortion? 
Anne, you want to take a business course and start your own art business? Are you sure that won’t be too much for you?

I was SO excited about going skydiving on my birthday!

And most recently, on my birthday (August 12th), I decided to go skydiving in this small town of  Innesville.  I paid my money and explained that I was in a wheelchair. The company assured me that this wouldn't be a problem, they had a special instructor for people with disabilities. So, I went with my PSW/friend Megan.  I was happy, excited, and fearless!

And then this happened ....

So, Anne, you want to go skydiving? Well, ummm ... even though we’ve  had other people with disabilities dive with our company and don’t know anything about your abilities at all, we want to postpone your evaluation until next week so we can consult with the parachute company about people with CP. And, even when you do come in for your evaluation next week, I (the manager), the owner, and the expert instructor will all be there. Also, even though you signed a waiver saying you won’t sue us for injury or death, the owner has the last say because he still doesn’t want you to sue us.

I'm paraphrasing, of course.  These are the details of what really happened:

On August 12th of this year (my birthday), I had decided that I wanted to go tandem skydiving.  When I hadI called to book my jump a couple of weeks beforehand, I had informed the skydiving company (let’s call them Skydiving Innisville) that I was in a wheelchair. They assured me that it was no problem and they had an instructor who specialized in those types of jumps.  They asked no further questions regarding my disability, how it affected my body or any such thing.

On the morning of my jump, Skydiving Innisville called me to inform me that the specialty instructor (let’s call him Ross) had called in sick, but that I could come in anyways, no problem.  However, less than five minutes after arriving, the manager (let’s call he Janice) immediately escorted my PSW (Megan) and I into a separate room.  There, Janice told Megan and I that I wouldn’t be jumping that day, or at all!  Janice explained that as we came in, the instructor assigned to me (a replacement for Ross) said he wouldn’t jump with me.  As I tried to voice my objection to this development, Janice told Megan that she couldn’t speak with me because she couldn’t follow along with my communication board. (I point to letters, words, and phrases to communicate.).  Janice didn’t seem to understand the concept of a speech facilitator, someone who interprets what a person who has a communication disability is trying to convey, much like how an ASL interpreter assists a person who is Deaf.

With Megan’s assistance I asked Janice to explain exactly why she didn’t think I I could jump.  Her response was that just by looking at me, she and the instructor (the one who was replacing Ross, the expert in these types of jumps!) were 100% sure there was no way I could do it.  (During my entire time at Skydiving Inness, I never met said instructor.) Irritatingly, Janice suggested that Megan could still do the skydive and that they would “let” me ride in the plane and watch.  Megan and I were shocked by Janice’s insensitivity! Finally, Megan said, “We’re actually jumping because today is Anne’s birthday and I would never jump without her.”  With assistance from Megan, I asked Janice to provide me with any concrete reasons as to why they thought that couldn’t handle the jump.  Janice explained that when your body goes from free fall to the parachute opening, you need a lot of upper body strength to handle it and you need to be able to lift your legs for the landing. 

I made it very clear to Janice that I have a lot of upper body strength!  (I am artist and use my upper body all day long), and I’m capable of lifting my legs up if needed.  Also, having my type of Cerebral Palsy is doing a 24/7 workout, because whatever I do, I use so much concentration to do anything that my muscles are always flexing.   I explained to her as well that although I’m in a wheelchair and I am non-verbal, I can stand with assistance or holding onto something.  Janice still said no to the jump. 

Megan pointed out that I was supposed to be jumping with Ross.  Couldn’t we simply call him and ask when I could make another appointment to jump with him?  Janice complied and called him.  Ross was very nice on the phone and asked me three questions, which I answered to his satisfaction.  1) How is my upper body strength?  I answered, very good!  2) How much do you weigh? I told him 100lbs, to which he responded, “Oh, perfect! You’re so small!” 3) Can you lift your knees to your chest?  I answered affirmatively.  (When I was replying to his questions, I was mimicking the actions - not to my full ability — to Megan, who was interpreting for me on the phone.)  Ross interjected that the other instructors of Skydiving Innisville had limited specialty jump experience because the company always asks him to do them. He told us he wasn’t surprised the replacement instructor was uncomfortable jumping with me because he’s the one that handles these types of jumps.  Ross sounded confident he could do the jump with me, and we compared schedules to book a date for me to jump when he and I were both available.  We agreed on Wednesday, August 14th. 

After we got off the phone with Ross, Janice piped up and said, “Just because you booked an appointment doesn’t mean you can jump. There’s only a 60/40% chance he’ll jump with you.”

 Despite her negative comment, Megan and I still had some hope that Ross would give me a fair assessment and let me jump.  So, Megan and I asked Janice if we could watch the instructional videos and sign all the paperwork to expedite things on Wednesday, as this process takes around an hour. She complied, but said I HAD TO PAY up front if I wanted to do this, and added that even if we did all that and paid for the jump, we still might not jump. This company offers a birthday discount if you jump on your actual birthday. At this point, I was very disappointed I wouldn’t be jumping that day and asked if I would still get the birthday discount. She hemmed and hawed and said, “well, we don’t normally let people have the discount if it isn’t their birthday but I guessssss since you showed up on your birthday, we can make an exception.”

We processed our paperwork and watched the videos. The videos we watched expressly stated that NOBODY could sue the skydiving company upon injury or death, and if someone did, all lawyer fees and damages would be paid back to the skydiving company.  Knowing that, I signed the paperwork.  While reading over the waivers, they reiterated that upon injury or death, Skydiving Innisville COULD NOT be held liable in court.  Feeling devalued, unheard, and humiliated, Megan and I made the 1.5 hour drive back to my place.  Then Megan went home as well.

Less than three hours later, Megan received a call from Janice who told Megan that she didn’t know if I could pick up my phone myself.  Megan called me on the other line and explained what happened and merged the calls.

Janice started off the conversation by thanking me for coming and apologizing that our day “didn’t go the way I wanted or expected it to.”  She then said that after I left the owner (let’s call him John) came in and they “discussed my scenario.”  Janice explained to John that she was concerned about the possibility that I wouldn’t be able to support my own body weight, and if that happened the outcome of my landing may not be perfect.  She said the owner then brought the concern of a hard parachute which could give me a soft injury. She said it could happen to anyone and it couldn’t be foreseen. She went on to say that one of her instructors got a soft tissue injury in his back recently as a result of a hard parachute release. She continued and said, “So, I’m very very sorry to say, because I know that both of you are absolutely determined and you both want to enjoy skydiving, but I think that we’re not willing to put you, Anne, at such risk, nor our instructor.”

With my PSW Brittainy’s assistance, I pointed out to Janice that everyone who comes to Skydiving Innisville signs the same waivers and takes the same risks.  So, to refuse me is discrimination.  I wasn’t made of glass! Megan interjected and said that a lot of people judge my ability on how I look and that I’m probably in better physical shape than she is.  She told Janice that she was disappointed that the whole situation was being handled with such abject discrimination.  I pointed out that no one had made a physical evaluation of me and that it should be MY decision and Ross’s decision to say if I am capable of jumping.  Janice said that when anyone in a wheelchair books a skydiving appointment, they are told that there’s an evaluation period.  I told her I hadn’t been informed about any of this at all!  Megan pointed out (again) that since Ross was to be my instructor, and he hadn’t physical evaluated me, that we were still in the evaluation stage.  

 To be continued ....