Do It Myself Blog – 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?

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.

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

Presented as part of the Cultural Olympiad, Kickstart Disability arts & culture is hosting the groundbreaking exhibition “Out From Under: Disability, History & Things” that pays tribute to “the resilience, creativity and cultural contributions of Canadians with disabilities”. The exhibition is on now until Sunday, March 21st at the University of British Columbia’s Robson Square campus.

Darrell and I took in this display while at Robson Square for the Paralympic Torch Relay. I found the display to be a sobering reminder of people with disabilities were treated or, more accurately, mistreated in the not so distant past.

I found the display case with three shovels to be most jarring. The written explanation read:

Every object has a history. And every history has some relationship to disability. One simply needs to dig for it a little.

Take the ordinary shovel.

Shovels have been used in conditions of forced institutional labour and to bury disabled people in unmarked graves.

Fancy shovels with commemorative plaques have been used at sod-turning ceremonies for rehabilitation facilities, as a way of recognizing charitable benefactors.

Shovels adapted for accessibility today enable disabled people living freely in

communities to do whatever garden or yard work they choose.

As disabled people find and claim their power, they take hold of the tools once used to push them under.

(From: The exhibition text)

The ordinary shovel was accompanied by a photo of the mass grave site at the Woodlands School in New Westminster. That could have been my fate had my parents listened to the medical professionals and had institutionalized me because I “wouldn’t amount to anything”. Chilling!

Ironically, after viewing this historical display of how people with disabilities have struggled to overcome oppression, I had to wait for an UBC employee to unlock the wheelchair washroom. The men’s and women’s washrooms were unlocked, but the wheelchair accessible washroom required a key. WTF? I couldn’t believe it! What happened to freedom and independence when I need to wait for someone to come to unlock the door so that I can pee?

However, this was nothing compared to what it took for one of the exhibition’s curator and disability rights activist Catherine Frazee to travel from Toronto to Vancouver to be at the show during the Paralympics. Unable to fly due to her disability, Catherine decided to spend four days and nights to travel by train; historically the railway united the country and she was looking forward to experiencing that part of Canadian history.

But Via Rail insisted Catherine and her customized wheelchair had to travel separately; not a possibility for her. Catherine and her assistant/life partner were forced to drive down to Chicago to board the Amtrak with an accessible sleeping car  to travel to Seattle and rent a van to get to Vancouver. 

Can you imagine denying Canada’s top disability rights activist the use of her wheelchair when traveling by train?

Perhaps a wheelchair accessible washroom key and a Via Rail ticket will be added to the “Out From Under” exhibition years from now.

Today efforts are being made to include people with disabilities in the classroom, in the workplace, in the community. So, why in hell is the world’s largest sporting event still segregated into the Olympics and the Paralympics? Are sports stuck in ancient Greek times?

If the Olympics were divided along any other lines – gender, race, religion, economic – there would be an outcry worldwide! Yet, segregation based on ability or disability is acceptable?

Not only are the Games segregated, but the Paralympic Games and athletes do not receive anywhere near the attention as the Olympic Games do. My main mission for last week’s Pre-Olympic Photo Walk was to capture signs that the Paralympics are also coming to town. I found only two!

First, on the opposite side of the Olympic countdown clock, I was pleased (and somewhat relieved) to see an official clock for the Paralympics. Interestingly, watching people taking photos in front of the Olympic clock, they did not then go to the backside for photos of the Paralympic clock. And, those people coming across the plaza didn’t realize that was Paralympic clock and were confused there were 44 days to go.

The second sign I found was a banner in an office tower window that read, in part, “TMX, proud sponsor of the Canadian Paralympic Foundation”.

Those were the only two signs I found that elite athletes, albeit with disabilities, are also coming to Vancouver. How welcomed will they feel?

Watch the Games official sponsors’ TV ads. How many include Paralympians? The current ad by Bell, Premier National Partner and Exclusive Telecommunications Partner for the Vancouver 2010 Olympic and Paralympic Winter Games, does not show any Paralympic events or athletes. Furthermore, the ad says the Games are 17 days. Do the math: February 12th-28th + March 12th-21st is not 17 days!

The Olympics will be broadcasted ad nauseam; the Paralympics? You will likely have to wait until the Late Night News for a 30-second clip of the day’s highlights.

Even February’s issue O magazine has two articles related to the Olympics. What are the chances the Paralympics will receive the same space in March’s issue?

Why have segregated Games? I’m not saying have combined events with both able-bodied and disabled athletes. Although, watching Roberto Luongo and his professional athlete buddies play against the Paralympian sledge hockey team would make for a far more interesting game rather than another NHL-style gold medal game! But, combine the Games, like the how the 2002 Commonwealth Games in Manchester, United Kingdom, included a handful of Para-Sports. Granted, there were only ten events in which elite athletes with disabilities could compete, but a step in the right direction was taken. The Parade of Athletes, athlete village and such were inclusive. 

Brian McKeever, a member of Canada’s cross-country ski team who also happens to be legally blind, will be the first-ever athlete to compete in both the Olympic and Paralympic Games. In an interview, Brian said, in part, “…shows what Paralympians are capable of doing, that they’re training at the same level as able-bodied athletes…” How will his two experiences compare? Will he receive similar sponsorship, media attention and public attention at both Games?

What do we tell our youth with disabilities?

Work hard and try your best, and one day you could go to the Paralympics too! You may not receive the same sponsorships, the TV cameras may not be there, and the spectators may be fewer, but all of that doesn’t really matter. Just do your best, kid, and you’ll go far.

There has to be a better way!