Do It Myself Blog – Glenda Watson Hyatt

Prior to TransLink installing the fare gates, people with limited or no hand function did not face a barrier in entering the skytrain stations. As long as they carried Proof of Fare – like all other passengers, they were able to enter the stations – like all other passengers.

The addition of the fare gate meant the addition of a barrier, where one did not exist previously. For some, tapping a card is difficult; for others, impossible. For me, some times it takes two or three taps for the gate to open.

After much discussion, research, head scratching and further discussions, a solution has been found: a Radio Frequency ID (RFID) card that opens the gate when the passenger nears. Brilliant! Apparently the first in the world.

I’m assuming RFID card also has the capacity to pay the fare; I’m not looking for a free ride.

Brilliant solution. However, the current implementation sucks.

People requiring this solution to the barrier need to apply for a RFID card. This means completing a form – name, birthdate, contact info, disability, reason why unable to open gate – requiring a medical practioner’s signature. A signature that often comes with a fee.

This means TransLink has this personal information about one segment of its customers that is not required from other passengers. Another tiny piece of me to sit in some file, some database, somewhere.

The application process also involves an assessment by a TransLink-appointed healthcare professional at a SkyTrain station. I’m guessing to determine whether or not the applicant is able to tap. I’d hope I was having a snazzy day, otherwise I probably will not be eligible for this futuristic card.

Imagine if the same implementation was used for elevators – the solution for those unable to use stairs; that people requiring the elevator needed to apply and provide medical documentation.

Imagine how fewer people would be using the elevators; only people needing the elevators would be the ones using them.

Imagine the less wear and tear; the savings in elevator maintenance and repair.

Imagine the public outcry!

Imagine if all fare cards were RF enabled. That would be universal design.

http://www.cbc.ca/news/canada/british-columbia/translink-disabled-system-1.4500478

Minister for Sports and Persons with Disabilities Carla Qualtrough and her team are holding public consultations around the country and gathering thoughts, perspectives and suggestions for the forthcoming Canadians with Disabilities Act, for an #AccessibleCanada for all.

Last Saturday, a public consultation session was held in Vancouver, British Columbia. I had the opportunity to share the assumptions, misperceptions and barriers that I face living with a speech disability. Click to listen to my words.

(The transcript is below. Please ignore the extra commas; they help to make a synthesized voice sound a teeny more expressive.)

Good afternoon! I am Glenda Watson Hyatt, a self advocate, an author, and a motivational speaker.

I have both a physical, and a speech disability. Of the two, living with a communication disability, is the most frustrating and isolating. Simple tasks like inquiring about a government service, calling for a taxi cab, or even ordering a chai tea latte, can be an exasperating ordeal.

Like other Canadians living with speech and language disabilities, I am often assumed to be cognitively impaired, or deaf, in which case, gesturing ensues, an impromptu game of charades. Friends with communication disabilities, have been assumed drunk, and the police or paramedics needlessly called.

Our methods of communicating are often denied. For example, on one trip to the emergency room, my husband, who also uses a wheelchair for mobility, was told to wait in the waiting room, because there was not enough space for both of our chairs. We attempted to explain that, I needed him for assistance with communication, yet he was still told to leave. Imagine a person who is deaf being denied a sign language interpreter. The situation is similar, yet my need for assistance with communication, is typically not recognized. My communication access requirement is not protected.

Other medical doctors have refused to speak directly with me. They do not seem to understand that, even though they do not understand my speech, I can hear them and understand them.

When medical professionals do not understand, do not respect, that hearing and cognition, are not necessarily impacted, by communication disabilities, then there is little chance, the general public will understand, and respect this, without an ongoing, widespread, information and awareness campaign.

This lack of understanding, of my actual disability, makes complex endeavours, like finding meaning employment, extremely difficult, if not impossible.

I am struggling to get by on social assistance, not because I lack education, skills, talents, motivation, or technology to accommodate my disability. I am struggling on social assistance, because I could not find an employer, who saw beyond the assumptions, and misperceptions, of my disability.

Even within the disability community, people with communication disabilities, are routinely overlooked and excluded. The non partisan, Barrier Free Canada, a major driving force for the Canadians with Disabilities Act, states in its principles that, “The Canadians with Disabilities Act should apply to all persons with disabilities whether they have a physical, mental, sensory, learning and, or intellectual disability, or mental health condition.” Canadians with communication disabilities, are not mentioned.

What would it take to fix these barriers?

Begin by following, Barrier Free British Columbia’s lead, which includes in its principles, “The Act will apply to all persons with disabilities whether their disability is considered physical, sensory, cognitive, communication, or mental health related.”

Canadians with speech and language disabilities, need to be recognized, to be heard, to be included. We may not be the most vocal group, but we still need to be at the table, to be involved, and to be contributing. We need to have, our communication access requirements, acknowledged, and protected.

Thank you!

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After posting the letter to the optometrist last night, I feel compelled to explain why I took the approach that I did.

Coming home on Monday afternoon and writing a scathing letter to her would have been easy. But, what would that have accomplished?

There is way more than enough hurt and pain in the world these days. Why contribute to that? What would be accomplished by me making her feel badly?

She was not rude or nasty, but, rather, unenlightened in how to deal with my disability – or what she perceived to be my disability. She was same unenlightened self during my first eye exam five years ago, when I did not take any action to remedy the situation. My bad. Yes, I know.

This time around I guess I am in a different place. I feel more confident to do something, but something of value, something that might move us forward. That is why I took the approach that I did: I explained my actual limitations and dismissed non-existing ones, outlined what I needed, and suggested how she might play an active role in moving forward.

Less than an hour after publishing that letter here on my blog, my autobiography I’ll Do It Myself finally hit #1 in its category on Amazon – after it had been stuck at #2 for two weeks. My book is now officially an Amazon bestseller!

Coincidence or karma? You decide.

Monday was exam day for my eyes. It didn’t go as well as it could have. Not because my eyes did poorly, but because of the body they inhabit. The jerky, constantly moving, speech impaired body that the optometrist was not enlightened to deal with.

She spoke loudly, simply and repetitively as if me being speech impaired also meant I was impaired cognitively. She admonished me for not keeping my head in the correct position and for not opening my eyes for the drops.

It took all I had within me to a) not yell something back at her, and/or b) not burst into tears. I left the office feeling devalued, depreciated, and downright pissed off.

After spending some time ranting with my friends on Facebook and sleeping on it for a few nights, I decided enlightening this otherwise well-educated woman was my role, my duty. Today I picked up my new purple reading glasses and hand delivered the following letter.

Autobiography: amzn.to/U6N5uW
Blog: www.doitmyselfblog.com
LinkedIn: www.linkedin.com/in/glendawatsonhyatt
Twitter: @GlendaWH

October 19, 2012

Dear Optometrist:

After my eye exam on Monday, October 15^th, I left the office feeling devalued and depleted. I am hoping by sharing the following information, the next exam will go smoother for both of us.

As you might know, I have athetoid cerebral palsy. For me, this means I lack muscle control and coordination. My physical movements are jerky and involuntary; one body part or another is in constant motion. My speech is also significantly impaired, yet can be understood by individuals who take the time to listen.

However, my hearing, understanding and cognition are not affected. There is no need to speak loudly, to repeat yourself or to use simple vocabulary for me to comprehend.

Next time I will grab my iPad from my scooter basket before my scooter is moved out of the way so that I have a more effective means of communication at hand.

My head control is tenuous at times. When conducting the eye pressure test and other such tests during which my head must remain still in a certain position, it might be helpful to have someone hold my head steady.

My eyes closing when something is approaching is a strong, uncontrollable reflex. Repeatedly stating that I need to open my eyes for the eye drops is not productive. Perhaps another method can be found to achieve the same result.

Please keep this letter in my file so that it will be handy for my next appointment in three years, which is what the Ministry will pay for; not the recommended two years. Perhaps in that time you could consult with colleagues and other optometrists for further suggestions on how to best serve patients with cerebral palsy and other neurological disorders.

Working together will ensure successful care for my vision.

Respectfully,

Glenda Watson Hyatt

The day after being told by Texas Department of Assistive & Rehabilitative Services that then 3-year old Caleigh would need to wait until starting school for a communication device, her mother Holly purchased an iPad and the Proloquo2Go app.

Caleigh has been communicating ever since. Thankfully she didn’t need to wait until she started school to find her voice.

After having the iPad for a short time, Holly explained, "We’re not having to fight to prove to people that she is a smart little girl anymore, because it’s there once they see her using the iPad.”

Caleigh has been able to communicate things that she never would have been able to without her iPad. She expressed “I like it” while at the beach during summer vacation.  She asked for “more” after riding her first tricycle at the Abilities Expo in Houston.

Late this summer, with the start of Pre-Kindergarten on the horizon, Caleigh shared she was having dreams about not being able to talk at school.

How heartbreaking! I can totally relate to her fear.

Frustratingly, her dream (or nightmare) came true on only Day 2 of school…

First, the speech therapist came in for a session consisting of a clip board with pictures that Caleigh was supposed to point to in response to the therapist questions; not her known and familiar means of communication. Her iPad, her only voice, was not within reach for her to use. 

After commenting to Holly that Caleigh had not paid attention during the lesson, the speech therapist admitted that she had not read Caleigh’s file prior to the first session. Who was being inattentive?

Then, the teacher and various therapists took her iPad to see how Proloquo2Go was set up; no doubt, without asking Caleigh’s permission or explaining how long they would have it.

Don’t take away the kid’s voice!

She was left with only one way to communicate: her cry. By the time Holly picked her up after the three hours (she had been waiting in the parking lot the whole time and would have been right there had someone called), Caleigh’s belly was extended and an area of bright red flesh was coming out of the g-button hole (for her g-tube feeding) like never before because of the amount of crying.

School days have not overly improved from there.

Thursday’s parent-teacher meeting left Holly in shock. The bottom line: the teacher does not believe Caleigh is the one communicating on the iPad because of the way Holly supports her elbows due to Caleigh’s dystonia (involuntary movement). “They do not believe that a 4 year old that is non-verbal, in a wheelchair and has a vision impairment could cognitively know what Caleigh knows.”

Holly also mentioned that the physiotherapist, who is also the Assistive Technology person, started off the little “get to know Caleigh’s iPad’ session by saying "now for those of you who aren’t familiar with the iPad, it was never made to be a communication device. Some parents have taken it upon themselves to make it one."

At this point in reading Holly’s account, I had my hand over my mouth and tears swelling in my eyes in utter disbelief. An iPad is not an communicator?

The iPad was not designed as a dedicated communication device is true. The iPad is a tool that can be used in countless ways; limited by only one’s imagination and the apps available at the time. The iPad can definitely be used as a communication device and is being used by thousands of people for that purpose.

This time last weekend I was in Portland, Oregon, solo. Because of my iPad, I was able to communicate with the hotel front desk that my supposed wheelchair accessible room was not accessible. I was able to order a double cheeseburger and an iced mocha from McDonald’s. I was able to carry on conversations with people I had just met. I was able to answer questions after delivering my PowerPoint presentation. (Yes, PowerPoint can be used for communication too, but that is another post.)

Do not dismiss the value of the iPad as a communication device solely because you are unfamiliar with using an iPad for communication.

Rather than putting Caleigh through the long ordeal of being assessed for another communication device that she may or may not be able to use independently, go with what she is comfortable with and move forward from there.

The process needs to begin with the teacher sincerely apologizing to Caleigh – not to or through Holly – for taking her iPad, her voice, without her permission. Reassure Caleigh that will never happen again and that the teacher respects her iPad as her way to talk.

Once trust and respect has been developed so that Caleigh feels safe to communicate, then – and only then – ask Caleigh a question without Holly in ear shot. Then have Holly support Caleigh as needed so that she may respond. You will then know who is or is not communicating. Gradually transition to other individuals supporting Caleigh in using her voice.

Meanwhile commend the parents Holly and Eric for their amazing work they done with Caleigh to get her to this point. Work with them to find a way Caleigh can use her iPad independently. If that proves not possible, then work with them to find another appropriate solution.

Do not tear down and throw out the successes Caleigh and her parents have experienced simply because you do not understand.

Rather, see her for the bright little girl she is, and encourage and enable her to reach for dreams. Please.

Isn’t that what school is all about?