Do It Myself Blog – Glenda Watson Hyatt

(Photo credit: Jari Leivo)

A few months ago, I watched from my home office window as a couple of crows built a nest in the spruce tree. The eggs have since hatched and the babies are growing. Today must have been flying lessons. I looked out as the crows were squawking yet again. A well-intending woman was chasing after a fledgling on the ground, with two angry bird parents circling above her, reminiscence of Alfred Hitchcock’s The Birds. She carefully scooped up the baby and placed him on a lower spruce branch

Although the woman meant well, she was trying to help in a situation that didn’t require help; a situation I can relate to, well. Having a physical disability and being in a wheelchair leads people to assume I need help, even when none was solicited. Strangers have kindly assisted me, even after I cheerily responded, “No, thanks,” to their offer. I am then left feeling obliged to be appreciative for help rendered.

At times assistance is greatly appreciated. At other times, despite being slow or not being graceful, help really isn’t required and, sometimes, can be no help at all. When in doubt, simply ask if I would like help. Then respect my response, please.

There is one way you can help me at the moment. I will be sincerely appreciative if you would vote for me daily so that I might be paid to blog for a year. Thanks!

As for the baby crow, it’s probably best to leave it alone, unless it is obviously injured or in danger.

Despite taking an oath “to do no harm”, medical professionals are the worst at perpetuating disablism. Many of them do not see beyond the disability, disease or disorder to see the individual filled capabilities, potential and dreams. They use language that focuses on the deficit rather than on the positive. And, once an individual is diagnosed with a disability, then every future ailment is presumed related to that disability and is often discounted or completely disregarded.

I would like to share my most recent experience with medical professionals. For a bit of background: many, many moons ago, I had a triple arthrodesis done on both feet – surgery that, essentially, rearranged bones in my feet to stabilize my ankles, which were beginning to go over on their sides when I stood up. Despite the months of pain, the surgery was a success. I graduated from the heavy, metal long-legged braces to ones below the knee and then to none. However, the pediatric orthopedic surgeon warned that the bones may slip at some point in the future.

Fast forward to six years ago: bones in my left foot felt like they were grinding on each other, and the two protruding bones seemed to be protruding slightly more. When I showed my family doctor, his comment, in a patronizing tone, was, “Our bones tend to protrude as we get older,” at which point I was very tempted to have an intentional involuntary movement with my foot making forceful contact with one of his sensitive body parts. I was sent for x-rays, which, with athetoid cerebral palsy and constant movement, is another story.

Over the years I have shown my permanently swollen ankle to various doctors with little concern in return. One doctor did send me for more x-ray – another exercise in frustration. The radiologist report came back saying something like, “Paraplegic patient has no broken bones.” Up until this point, I had been a quadriplegic, meaning that all four limbs had been affected. Wow, a paraplegic! I had been half cured and hadn’t even realized it.

August, 2005, I was in for my annual thrill and asked the gynecologist for a referral to an orthropod. Her nurse chose a name from the yellow pages, further diminishing my confidence in the healthcare system.

After another fourteen months of pain, I finally had an appointment with an orthopedic surgeon, not that those are comforting words to me. Finally someone took interest in my foot. With more x-rays, it was determined that bones have not moved. Without comparing these x-rays with the post-surgery x-rays from years ago, I’m not sure how this determination can be made, but I’m not the highly educated, highly paid expert. The news that I don’t need surgery was a relief; I was dreading having to go through that painful experience again. He referred me to a brace maker; another idea that didn’t thrill me, but definitely better than undergoing the scalpel again.

November 3rd, 2006 – a day I remember well, although not fondly. We were caught in one of Vancouver’s worst ever downpours and Darrell’s electric wheelchair shorted out. We were soaked! The alleged brace maker turned out to be Rehabilitation Specialist of some sort. I have a semantic issue with rehabilitation and cerebral palsy. According to the Merriam-Webster Online Dictionary, to rehabilitate means “to restore to a former capacity”. Cerebral palsy occurs during or shortly after birth. There is no former capacity to restore.

Putting labels aside, this doctor proceeds to ask us a ton of questions unrelated to my foot, and adds, “I’ll ask you (indicating me) the questions, but I want your husband to answer to save time.” And this specialist is supposed to work with individuals to regain independence and self-reliance? It is interesting how medical professionals can least understand Glenda-ish. Any correlation with the amount of time they spend listening to their patients?

Almost as afterthought, he examined my foot. I was cold and wet, and he told me to just relax. Does this specialist know anything about athetoid cerebral palsy? A relaxed state is not something I can turn on and off on command. He concurred that I need a brace of some sort and referred me to an orthotist.

After a ten-minute appointment, Darrell and I left St. Paul’s Hospital and headed back into the downpour, at which point Darrell’s three-month-old wheelchair completely and totally died. We needed to get from downtown Vancouver to our home in Surrey. Darrell desperately called his friend who works at the University of British Columbia. Thanks to his friend pushing Darrell in his heavy chair to the Skytrain and then up the hill, we eventually made it home.

Friday, after a couple of canceled appointments due to bad winter weather, I had the first appointment with the orthotist, the brace maker. The appointment was off to the typical start of taking a history and ascertaining why I was there, but I had hope for her because she was listening to and, for the most part, understanding Glenda-ish. Then the Rehabilitation Specialist arrived late and the staff stood around discussing an upcoming conference and other clients – on my appointment time! I heard him mentioned he didn’t have my file because his secretary was on holidays, the replacement secretary couldn’t find the file or the dictation file on the computer. Considering she called me “Hyatt” when she phoned with the appointment time, my haunch is my name got messed up on the file, which subsequently was misfiled – another insignificant medical error.

Practicing some patience, they eventually rejoined Darrell and me in the exam room: two orthotists the rehab specialist, a physiotherapist, and a student, of course. They took turns poking and twisting my foot. Then they began discussing me as if I wasn’t there. I tried interjecting, particularly when the word botox came up. I said I would need a lot more information first, to which the specialist annoyingly replied, “Of course. We’re only strategizing.” Strategizing about me without me? I told Darrell that I’d rather have a rum and coke than botox to relax me for the casting. Unfortunately that didn’t get translated.

Not one of the four professionals explained the problem with my foot, what these braces or AFOs (ankle-foot orthotics) are like nowadays, or asked for my input. Some things haven’t changed in forty years, although I didn’t need to strip down to my underwear this time. I left with a sore foot and leg, and feeling less than an intelligent, independent and capable woman. In a way, I had been stripped. Would I have been treated the same way had I been an articulate able-bodied individual?

From what I understood from the discussion going on around me, a partial correction is probably the best that can be hoped for. My question is: if it hadn’t taken six years to get to this point, might the outlook be better? If I had been taken seriously by my family doctor back then, before my foot became worst, would a complete correction have been possible? Would this process have been quicker if I didn’t have cerebral palsy? Would I have been taken more seriously had I been a star athlete or a highly paid executive? How many doctors do I need to see in order to be heard?

These medical professionals can take a few lessons from the United Kingdom’s Good Medical Practice (2006), which “sets out the principles and values on which good practice is founded.” The duties of a doctor include:

• Treating patients as individuals and respecting their dignity and right to confidentiality;
• Working in partnership with patients by listening to them and responding to their concerns and preferences, and giving patients the information they want or need in a way they can understand; and
• Respecting patients’ right to reach decisions with you about their treatment and care.

It would be so refreshing to have all doctors treat me in this manner. Is that too much to expect?

Since it is still May 1st, I am going take a second stab at writing a “Bloggers Against Disablism Day” (BADD) post. I don’t feel my first attempt was well thought out or well-written; in my mind, it was just…well…bad. The problem was I wasn’t really fired up about anything in particular. But, now I am, and when this red-head gets fired up about something, look out!

My husband Darrell also has cerebral palsy. He uses a manual wheelchair inside and an electric chair outside. Last year he went jumped through the hoops of getting a doctor’s letter and an occupational therapist’s (OT) assessment in order to get a new power chair through social assistance. The process took months and the thing cost as much as a small car!

Now he needs a new cushion for his manual chair. The gel has hardened, which isn’t comfy for his boney butt. Last week his family physician gave him a prescription for a gel cushion; he wrote what Darrell asked him to. After all, what does a general practitioner know about wheelchairs and cushions! Today Darrell took the script into the social assistance office to ask how to proceed; hoping that the current script and the documentation required for his eight-month-old power chair would suffice. Nope!

Darrell, who knows his own needs best, is not qualified to say what he needs. Rather, he needs to get a referral from his doctor (an appointment to get into see him takes a couple of week) to see an OT, which can another several weeks or months, to be assessed for the exact same cushion he has on his power chair and that is working for him. Then wait months for the approval process. Meanwhile, his ass hurts and we’re hoping he doesn’t end up with a pressure sore.

How is this assistance?

It’s not that we want to rely on social assistance; we’d much rather be financially independent. But, as I explained in my first BADD post, finding employment with a disability is not always easy. And, being “medical equipment”, the cushion is so outrageously priced; we can’t afford to buy it ourselves without a job. One cushion is the same price as our dining room table and six chairs (seat AND back!) we bought when Darrell was working.

This is only one example of how the system keeps us down and dependent. From personal experience, it is extremely difficult to free yourself once you are sucked in.

The decisions and policies that dictate our lives are made policymakers who have no clue about our lives. Yet, if we speak out, we are labeled as “bitter, ungrateful disabled people”.

Right now there is a lot of talk about Web 2.0, Accessibility 2.0, and this or that 2.0. I want to coin a new phrase “Disability 2.0 – Nothing about us without us”. Will it catch on?

May 7th update: This morning Darrell called the OT who assessed him for his power to ask about a new gel cushion for his manual chair. According to the OT, the Ministry pays for only one gel cushion because an individual can sit in only one chair at a time. To clarify he understood, Darrell asked, “So, am I suppose to levitate in mid-air as I swap my cushion?” Apparently the OT was annoyed with the question, said he didn’t have put up with such nonsense and threatened to hang up.

Because the OT has closed Darrell’s file, Darrell needs to go back through Central Booking for an appointment with this OT, which may take three weeks. Then the paperwork goes to Victoria for approval. If denied, since he already has one gel cushion, Darrell has the right to appeal, which takes more time – we’ve been there before. Meanwhile, Darrell is at risk of developing a pressure sore.

Today I join more than 100 other bloggers in blogging against disablism. The intent is, by joining together in discussing discrimination still facing people with disabilities, we will bring the issue to the forefront yet again.

What is disablism? A pamphlet by Demos, the British think tank for everyday democracy, offers this definition:

Disablism n. discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others.

(although you won’t find a definition in a dictionary)

Disablism is the British equivalent of the American term ableism used to describe discrimination against people with disabilities in favour of people who are not disabled. Ableism discriminates, devalues and denigrates the same as does racism and sexism. Ableism treats those without disabilities as the standard of “normal’, against which everyone is measured.

Being a woman who has lived with cerebral palsy for forty years, I could share countless stories about how I have been discriminated against and treated “less than” by doctors, bus drivers, potential employers, and strangers. Discrimination, whether direct or indirect, is the main reason I chose the self-employment route. It’s not because I didn’t want the steady paycheque, the pension plan, or the friendly banter around the water cooler; it is because employers couldn’t get beyond their heebee-geebees about my disability during the interview process.

One interview was at an inaccessible building (another form of discrimination), yet the employer blatantly refused to meet with me at a more accessible location. If he had determined I was the most suitable candidate and had offered me the job, Vocational Rehabilitation Services could have then stepped to assist in making the workplace accessible. By refusing to interview me, he did not permit me the opportunity to demonstrate my capabilities, skills and talents. I eased my hurt by convincing myself that he missed out on hiring the most meticulous and creative Newsletter Coordinator he ever would have had. But, in reality, the experience did (and still does) sting.

I could go on and on about ways I have experienced discrimination and disablism (or ableism, depending upon which side of the pond you are on); but, really, where would that get us? What good is rehashing negative experiences? And, according to the Law of Attraction, focusing on negativity will only bring more – that is something I can definitely do without! Rather than being against disablism, I’d rather be for inclusion. By focusing on what I want, rather than what I don’t, the Law of Attraction works in my favour.

Being self-employed and working mainly in the virtual world, I can choose when and how much to disclose to clients. Many clients do not know the extent of my cerebral palsy; those who do know do not see it as a factor as long as I can do the work. We focus on the task at hand and my talents, expertise and passions are fully utilized; such a liberating feeling!

If my disability doesn’t matter much online, how can we make disabilities less of a deal when face-to-face? How can we achieve an inclusive society? I’d love to hear your ideas. Let’s talk.

On Thursday, April 26th, children and youth will be joining their parents at work for the annual Take Our Daughters And Sons To Work® Day, created by the Ms. Foundation. Many workplaces are hosting tours, films and other fun activities to introduce these kids to the workplace, to show them the value of their education and to inspire them to envision their future.

What about children with disabilities? Will they be equally included in this important step in exploring their possible career choices? Will employers and colleagues welcome children with disabilities into their parents’ workplace in the same manner in which they welcome children without disabilities? Or, is this another event in which children with disabilities and their parents feel excluded? Is the workplace even accessible to people with various types of disabilities?

When I began thinking about writing about making Take Our Daughters And Sons To Work® Day inclusive, I had wanted to share the innovative ways employers were including all children in this day. After spending a couple of hours searching with Google, I was surprised (or, maybe not that surprised; more disappointed) to find very little on the subject. Even the official Take Our Daughters And Sons To Work® Day website, which offers activity tips to workplace coordinators, teachers and parents, wasn’t enlightening. The site isn’t even accessible to people with disabilities.

Given that this year’s theme is "Revolutionizing the Workplace", I would like to initiate a discussion on how we can revolutionize the workplace by making it truly inclusive and accessible, beginning with the first introduction to the workplace: Take Our Daughters And Sons To Work® Day.

Although it is too late for this year’s “Take Our Kids to Work” Day, it is not too early to start planning to make next year’s event inclusive. Here are a few ideas to get the discussion going:

• Include employees and guest speakers with disabilities in the day’s event.

  For example, in 2004, Merrill Lynch invited Paralympic athlete, model and actress Aimee Mullins to be one of three important role models to speak about their achievements, answer children’s questions, and take them to exhibits and business meeting simulations.

• Include images of children and adults with disabilities in promotional materials.

  When people can relate to individuals portrayed in images, they are more likely to feel the material may relate to them. To encourage children with disabilities (and their parents) to participate in the day’s activities, the content must also relate to them.

  The way in which individuals with disabilities are portrayed is also important. In off-the-shelf images, individuals with disabilities are often portrayed in inferior roles; for example, as the child, student, patient, victim, or employee. Images portraying individuals with disabilities also as parents, teachers, sales people, managers, business owners, doctors/nurses or lawyers, would aid in dispelling the helpless/dependent stereotype often facing people with disabilities.

• Use an inclusive policy in promo material.

  For example, Penn State University encourages persons with disabilities to participate in its programs and activities. Contact information is provided if you anticipate needing special accommodations or have questions about the physical access.

  Similarly, the National Institutes of Health provide Sign Language Interpreters and other reasonable accommodations upon request.

• Show films that include captioning and auditory description.

  Also, when showing films to excite and educate children about career possibilities, try to use films that include employees and employers with disabilities. Such films may be scarce; inclusive career and recruitment videos may be an area for improvement. The Canada’s Private Broadcasters’ Public Service Announcement – “Open Your Mind” is a refreshing example of people with disabilities being portrayed as successful employees.

Including people with disabilities in Take Our Daughters and Sons to Work® Day not only benefits children with disabilities by encouraging and inspiring them to reach their full potential, it also shows those without disabilities that the workplace, and society at large, needs to include and accept diversity. At some point during your daughter’s or son’s career, a child with a disability will be your child’s employee, colleague or employer. Are both children being prepared for their roles?