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 ....

Sunday, August 11, 2019

It Hurts

 It hurts. Grief actually physically hurts. Drawing from my own experience, I can say that my gut clenches up and there’s this terrible constant dull ache in my chest that feels like my heart is breaking. There are times when I feel like curling into the fetal position and bawling my eyes out. Sometimes when I’m alone or with a good friend who understands, I do just that. Mostly, though, I wear a mask out in public to hide the pain.

For me, grief is like a Jack in the Box. One day, I'll be feeling fine, feeling as if my life is somehow on course, and then - Pop Goes the Weasel!  Some little thing will trigger me: a place, a song, or a smell. The tears start to flow and my mind starts to reel.  Images tumble around in my head - memories of one person I've lost ... two people ... three ....  Over the years, I've lost so many people I love.  My grief snowballs and becomes massive until I let myself cry it all out. There are days when I'm busy and happy, and I'm surrounded by people I adore.  And then, suddenly, once again - Pop Goes the Weasel!  Sometimes, when  I'm faced with any kind feelings of joy or accomplishment, I am immediately overwhelmed by guilt and regret. How can I be happy without the people who loved and supported me, and who were there from the very beginning? I know that this reasoning is faulty and that the people who have passed away would want me to be happy, but tell that to the ache in my heart. In recent years, my grieving process has gotten somewhat better, but that mean old weasel still keeps popping up occasionally, fucking with my mind and emotions.

Why am I writing this now?  Well, when my friend Leon died recently, and that damned weasel kept popping up, most of my friends and family were supportive and sensitive upon hearing the sad news. They said things like: Oh, I'm so sorry to hear that, Anne. I know how much Leon meant to you. If you need to talk, I'm always here for you.

 That's fine. That's all you need to say. Sympathy and support - that's all!

There were some insensitive things said and done, though.  Sure, I get it.  Not everybody has known loss or the pain of grief.  I understand that, I get it, I really do.  And yet, I feel like some people just don't think before they speak. Platitudes are only just bearable, things like:  Well, at least you have your memories, or Don't worry, sweetie, you'll feel better soon .... Yeah, right.  But people say worse things, like: Well, everybody dies, you know. Everybody dies.

I think the worst thing for me, though, was when I told a friend of mine that Leon had bone cancer.  Her response was, "That doesn't sound good!" and to Google the life expectancy of people with bone cancer.  I didn't want to her this information, hell, I was barely coping with the fact that Leon was sick.  I had lost so many friends and family members already, I just wanted some emotional support.  This may sound ridiculous, because it even seemed ridiculous to me at the time, but I actually hid in my own bathroom until my friend left.

In closing, I just want to sy, if you know someone who is grieving, try to be sensitive to their feelings, and try to put yourself in their shoes.

Grief hurts, man.  Grief hurts like a fucking bitch. 

Wednesday, July 24, 2019

My Wonderful Friend Leon Marr

I just found out that my dear friend Leon Marr died the other night from complications of bone cancer.  Leon was one of my closest friends, and he always called me his best friend.  Every Saturday he would come to see me at the St. Lawrence Market.  And every week he’d drop by to say hi to me and the cats. When I was in the hospital with pneumonia, Leon visited me every day. We were friends for 16 years!

He loved old movies, cats, and more than an occasional toke.  If you look him up on IMDB, you’ll see that he was a filmmaker -  a brilliant one at that!

It would really make Leon and I happy if you checked out “Dancing in the Dark “ and “Second Time Around.”

Thank you.

Rest In Peace, my old friend....

Saturday, June 1, 2019

It’s 2019 and I’m Still Busy

How can it be June 1st? Time keeps flying by at a breakneck speed.  Like a roller coaster ride, it’s both frightening and exhilerarating!

What have I been doing for the past six months?  Well, first, mundane things, like filing my taxes and  training new employees.   It’s both time consuming and yet necessary.  Writing and replying to emails and texts is also very necessary.  It’s like playing a never ending game of Whack-a-Mole! Managing the schedule of my employees is a less intense version of that game.  So is keeping on top of my financial log and ordering in new products to sell at the market.

I am a juggler, though. It’s what I do.

I am also an advocate for people like myself who have physical and communication disabilities.  Back in April, I gave a small talk at Queens Park regarding some of my own life experiences and views…

(Because I am a non-speaking person, I need someone who can assist me with communication within many social settings, such as, but not limited to, meetings and appointments.  This is important for me because I need to have a say in my own words and to feel included. If I was a person who was Deaf, organizations would automatically pay for a sign language interpreter to be on hand. What about having a communication assistant as well?  Not everyone with a communication disability is fortunate enough to have someone who can come with them to assist them in communicating.  We need to have access to trained assistants.  We want to see that addressed in accessibility laws. People who organize meetings should ask if we need assistance with communication, just like they ask if we need sign language or attendant services. It has been my experience that not many attendant services have been taught in the complexity of communication assistance.

In March of 2018, I was a victim of disability discrimination from a company that both sells and repairs wheelchairs.  Twice, I wrote emails to the management of the company detailing the inappropriate attitudes and actions of their employees. When I received no satisfactory response, I decided to register a formal complaint to the Accessibility Directorate of Ontario. I was more than a little surprised and disappointed by their response. In their email, the A.D.O. first indicated that I should handle it myself by writing to the company that had discriminated against me - even though I had explained that I had already done so!  Their second suggestion was that I should take my complaint to the Human Rights Commission. I thought that their response was extremely disappointing.  As a person with a communication disability, I lack the funding, resources and time it would take to go through the lengthy process of trying to receive help from the H.R.C. In conclusion, It is my opinion that the A.D.O. needs a more proactive system in which to handle complaints from people with disabilities, such as myself. Once a complaint is received, it should be taken seriously and investigated as soon as possible, and when the person or company is found guilty of discrimination they should be fined.  So many people are unable to register complaints of discrimination either because of physical limitations,  fear of retaliation, or frustration that their concerns won’t be taken seriously.)

I've also been extremely busy getting ready to go back to England in July for an Art Fair.  That's right, folks, I'm going back to London!!!  I think that's where I belong. And, I'm not sure why, but my art sales have been extraordinary this year!  Hopefully, I'll have the same luck at the Parallax Art Fair! 

Some people have tried to tell me to slow down because of my age. To them, I want to quote Queen, "Don't stop me now, I'm having a good time, I'm having a ball!" Keeping busy and juggling everything makes me feel alive and happy!