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 ....