Do It Myself Blog – Glenda Watson Hyatt

Your Accessibility Conscience

My Role When Self-Advocating: To Rebuke or To Enlighten?

Filed under: Advocacy — by Glenda at 5:09 pm on Saturday, October 20, 2012

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!

My book - an Amazon bestseller - YAY!

Coincidence or karma? You decide.

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Optometrist Fails Eye Exam, Patient Enlightens

Filed under: Advocacy — by Glenda at 9:15 pm on Friday, October 19, 2012

Glenda wearing her new purple reading glassesMonday 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 15th, 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

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Teachers, Don’t Take Away the Kid’s Voice!

Filed under: Advocacy — by Glenda at 2:07 am on Sunday, September 25, 2011

Caleigh's first day of schoolThe 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?

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Responsible Blogging Afoot (or How I Advocate for Myself)

Filed under: Advocacy — by Glenda at 9:32 pm on Monday, May 30, 2011

Several weeks ago I shared what happened when my foot met the wall’s metal corner strip; the outcome wasn’t pretty for either one. I also shared my trip to the Emergency Room and how my husband was told to leave my side because there was not enough room for two wheelchairs, in spite of explaining I needed him for communication purposes.

Thanks to a concerned reader, my post was forwarded to the Emergency & Trauma’s Program Quality Improvement Assistant for the Fraser Health Authority. An investigation was launched and I was informed that I could expect a response within thirty business days. I made a note on my calendar.

Last Tuesday – thirty business days plus a few – I emailed the Program Quality Improvement Assistant to ask when I may hear the outcome of the investigation.

A short while later I received a call from the Emergency Department Manager. Thankfully Darrell was home to act as interpreter: the telephone isn’t my most effective means of communication. The manager apologized for her tardy response. She continued by explaining the ER is experiencing an extreme lack of space and that she is hoping the $700 million expansion will have more space. Space for patients in wheelchairs would be nice. She further explained that Darrell being told to leave should not have happened and she has discussed this with her staff.

When I asked what I should do if the situation should happen again, she offered her direct number, which, although kind, I wasn’t sure that would be practical in an emergency situation. She then said I could ask to speak to the nurse-in-charge – a much more direct and practical solution in my mind. I thanked her for her time.

in going through this process, I have come to two realizations:

  1. Initially, I felt that launching an investigation into a relatively minor incident (compared to the life and death situations the ER faces) was overkill. But I now have the words “ask for the nurse-in-charge” (words that hadn’t previously occurred to me) for next time, and next time might be more serious than an extremely sore foot.
  2. Sharing an upsetting experience in a blog post may be therapeutic, cathartic, and may garner a few comments or tweets. But readers might also be moved to take action based on words I have written. As a blogger, I feel I have a responsibility to not post a rant and leave it at that. I believe I need to write a follow-up post, much like this one, sharing what actions I took, what insights I gained, what lessons I learned, or something so that readers can also gain or benefit from it. I consider this responsible blogging.

In this specific situation, I can appreciate that the initial incident – Darrell being told to leave – was more a concern for keeping pathways clear should a stretcher need through urgently than a blatant denial of my access to communication; although the end result was still being denied access. I get that space is an issue; one symptom of our broken health care system. I did feel it necessary to allow the hospital staff the full thirty days for their investigation process without a barrage of emails on my part. I appreciate more urgent, more life threatening issues likely came up, delaying their response back to me.  I also felt it necessary to remain polite and understanding. At no point was there a reason for being rude or for escalating action, which may have resulted in me being blacklisted at the hospital, interfering with receiving appropriate care in the future. In the end, patience and understanding are key when advocating.

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Join Bloggers Uniting to Empower People with Disabilities

Filed under: Advocacy, Blogging — by Glenda at 1:58 pm on Tuesday, July 6, 2010

People First: Empowering People with Disabilities

I received this email from Jason Teitelman at BlogCatalog about an exciting upcoming event:

Hello Friend,

I just wanted to take a second and let you know about an upcoming BloggersUnite event, People First: Empowering People with Disabilities. It is taking place on July 24, 2010 and the goal of this event is to raise awareness about the challenges that face people with disabilities every day and how we can help eliminate these challenges.

By sharing stories of how you, a friend, a colleague, or maybe a family member have dealt with the challenges of living with a disability, we can raise awareness about this issue and bring down some of the barriers to equal accessibility and participation that exist today for people with disabilities.

If you don’t have a personal story to share, you can still help! Write about an organization that provides support to people with disabilities or that is helping to provide equal access. Let you readers know some facts about the number of people living with disabilities, the challenges they face, and how each of us can work towards creating a society that provides equal access to everyone regardless of our physical or mental abilities.

Whatever you choose to write about, we’d be thrilled to have you write a post as part of this event. Read more information about the event.

Thanks for reading and have a great day,

Jason Teitelman

I hope you can join me and fellow bloggers on July 24th to empower people with disabilities. Together we can raise awareness and make changes happen!

Thanks,
Glenda

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