Do It Myself Blog – Glenda Watson Hyatt

In two weeks, I’ll be flying to Smithers for the Social Planning and Research Council’s (SPARC) board meeting on October 12th and 13th. I have also been asked to speak about my lived experiences around community involvement and transportation at the Accessibility Dialogue on the Thursday.

When the topic was given to me, a flood of memories came to mind about how Mom would toss my red manual wheelchair into the car and off I’d go to my weekly Brownie meetings or on a weekend family camping trip or down to the stables to go horseback riding.

When I got my first electric scooter back in Grade Eight, it was a new sense of independence for me. I no longer had to rely on others to push my wheelchair. I was so excited about the freedom to go where I wanted, whenever I wanted! It meant that I could go to my friend’s house around the corner by myself. And, Mom was still able to disassemble it and lift the parts into the van.

While at university, there became a need for me to have a more powerful scooter to get safely around campus. The scooter gave me greater independence in the sense that I could go further on my own. But, that independence came at a price. My Mom and friends could no longer easily toss my scooter into the vehicle like they did before.

Darrell and Glenda wheeling around False Creek, Vancouver, BC

Now, with my outside scooter, my world has shrunk to the accessible bus routes and Skytrain lines. I’d love to go horseback riding again, but there isn’t a Skytrain station within close proximity to the riding stables. I’d love to try sit-skiing atop Whistler Mountain, but the mere thought of trying to arrange transportation for both Darrell and I zaps my energy!

Drafting my speech for the Accessibility Dialogue, I realized how transportation for those with mobility disabilities actually entails two components: getting from Point A to B, and getting around once at B. And, unless you have the financial means to buy a lift-equipped (and, in our case, a chauffer), these two components are interrelated, often with a trade-off between the two. Also, that combined transportation can greatly impact one’s involvement in the community.

My greatest sense of freedom (other than being atop of a horse) is scooting down the sidewalk, in total control of where I am going, with a contagious smile across my face….until I run out of accessible sidewalk!

(Photo credit: Sonja Mildner)

Saturday afternoon Darrell and I had our first martial arts class for people with mobility disabilities, which was quite a work out. Definitely more physically exerting than sitting at my computer all day! After only one session, I am feeling more confident in defending myself, at least from physical threats.

With us both being in power chairs, riding home on the bus means sitting across the aisle from each other. Any conversation we do have is overheard by passengers in close proximity.

An older woman was sitting in the one seat in front of me; her rosary beads in her hand. She looked up at Darrell and asked, “You understand her?”

A little shocked, Darrell politely responded, “Yes.”

She continued, “Is she your wife or a friend?”

Darrell replied, “She is my wife.”

Astonished, she asked, “She is really your wife?”

Somewhat annoyed, he confirmed that I was, indeed, was his wife.

At that point, I saw something I hadn’t seen in years: a look pity of washed across her face. Her rosary beads began moving at speed that I didn’t know was humanly possible. I can only imagine what she was praying: Please don’t let me catch this. Please don’t let me catch this. Please let me off the bus before I catch this.

As she left the bus at her stop, I couldn’t help thinking she was another unenlightened soul who probably had led a rather sheltered life. Who should feel for sorry for whom? Darrell and I laughed it off, and continued discussing our class and speculating what we may learn next week.

The condition Terrible Palsy came to mind:

This condition manifests itself through pity and audible sighing of those around you. Terrible Palsy can be deceiving because you can be asymptomatic for weeks, months, or even years, and then just when you and your family are feeling really good about your child [or yourself], it can present itself in the form of a condescending pat on the head or a blessing from an anonymous busybody.

One can learn how to defend against physical attacks. How does one learn to defend against such unseen yet potentially as harmful threats as Terrible Palsy?

(Photo credit: Peter Galbraith)

Having cerebral palsy means never being quite sure what my body will do next. I can do something a thousand times without too much of a hassle, and then completely mess it up the next time. Darrell and I call these CP Moments. I had such a moment this morning.

I went to make a peanut butter and marmalade sandwich for my breakfast, and discovered that the loaf of bread I had removed from the freezer yesterday for this morning, had been mysteriously put back into the freezer. No problem. I went with Plan B: Multi-Grain Cheerios and peach yoghurt.

I set the bowl, spoon, cereal box and yoghurt container on the table. I poured cereal into my bowl. With my jerky arm, a few Cheerios landed on my placement, which I picked up and put back in the bowl. Nothing unusual. Reaching for the yoghurt, fingers on my right hand, my bad hand, unexpectedly grazed the bowl’s edge, dumping most of its content on my lap and the floor. Ugh!

I muttered a bad word or two. Laughed at my CP Moment. Refilled my bowl. And swept the floor. What else could I do? That is every day life with CP!

Note:The Blog for a Year website has been down for two days. I have the contacted the organizer Charles Jolley, asking when the site may be back up. I have not received a response yet. Hopefully the site will not be down much longer. Thank you everyone for your continued support. I will post an update once I know more.

I am pleased to debut a short video produced by my tech-savy husband Darrell. In this video, I demonstrate how I use my left thumb and assistive technology to blog. Enjoy!

(Photo credit: Richard Styles)

Now that I’m wearing my butterfly AFO (ankle-foot orthotic) daily, I had to buy knee high socks. I haven’t worn knee highs since high school, when I had to wear my metal braces. My cute ankle socks are now shoved to the back of the drawer.

Between the clumsy plastic AFO, the knee highs, the black, men’s size 7 chunky shoes (needed to accommodate the AFO), and my baggy jeans (try finding fitted jeans with elasticized waists!), my bottom half is rather gorpy-looking. I’m now on the hunt for ultra feminine tops to counterbalance the gorpy bottom. And, I am hoping that we don’t get another hot spell this summer because I’m not yet confident enough to wear this ensemble with shorts! AFO surely stands for Anti-Fashion Objects.

In July’s O Magazine, Martha Beck shares research on the “spotlight effect”: the feeling that all eyes are upon us and, hence, to avoid embarrassment, we don’t live our lives to the fullest. Research found that “the spotlight effect makes most of assume we’re getting about twice as much attention as we actually are.” (Being in a wheelchair with a significant physical disability, am I imagining twice as many stares and whispers than I am actually receiving?)

Martha advises that we double everything – raising both hands to ask a question, pausing twice as long for dramatic effect, eating two servings of a delicious dessert – to feel liberated and to live life large. I wonder: would I become more confident if I had balanced gorpiness? If I wore two braces, would I be more apt to wearing shorts? Would the AFO then become an Almost Fashionable Object?