Yesterday was my first appointment with the new dentist. Being a beautiful day, we decided to wheel the approximate 20 blocks, each way. We will be hibernating soon enough.

There was a little "not talking to me" by the receptionist. With television psychologist Dr. Phil’s “You teach people how to treat you” ringing in my ear, we nipped that in the bud. Appropriately training them from Day One is the best strategy.

My concerned husband hollered “She has her iPad with her if she needs to communicate” as I headed down the hall with the hygienist. (Concerned because, after thirteen years of marriage, he knows he is in for an earful from his non-verbal wife if anybody dares not treat her as capable and intelligent.)

In that moment, I realized I don’t go anywhere, literally, without my scooter. I (almost) always carry straws with me. But, my iPad is not yet permanently attached to me. I am getting better at taking the gadget with me when I go out, but it still requires conscious remembering.

I also learned a valuable lesson as a new assistive and augmented communication (AAC) user: needing to fetch the thing from my scooter basket and turning it on before continuing the conversation is not being prepared enough for communication. Having my iPad on and ready to go indicates to other that I am ready and able to communicate.

And, use my iPad to communicate I did, for the first time, with a dentist.

The bottom line: one broken molar needs a filling, which he will attempt to do in the office next Monday. If he runs into a problem, he will call the College of Dental Surgeons for suggestions. I can not ask for more of that.

The other molar, which had a root canal done several years ago, will not fare as well: too broken to attempt saving, it needs to be pulled and the dentist is reluctant to attempt that one. I have a consultation with a oral surgeon next Tuesday; the consult is not covered by Ministry. If necessary, he can sedate in office. We will find out on Tuesday whether sedation is covered; strangely, full hospitalization is covered by Ministry,  but I really would like to avoid that, if possible.

Depending upon how Monday’s appointment goes, I am very tempted to switch dentists permanently. I was pleased at how he interacted and communicated with me. That makes all of the difference!

A quick update on my dental dilemma…finding a suitable dentist involves dealing with three accessibility requirements:

1. Physical access: Can I get to the dentist office, preferably without spending half a day on public transit? Can I get to the dentist chair? Needing to park my scooter and walk 8 feet to the chair does not count as accessible (for me); for others, it might pass.
2. Staff attitudes: A dentist and staff who communicates directly with me and can work around my jerky cerebral palsy are essential.
3. Directly bill the Ministry: Surprisingly (or not) many dental practices do not directly bill the Ministry, which is an obstacle for those of us on social assistance. The mere thought of attempting to be reimbursed after paying myself sends me shivers up my spine. (I’d love to hear from others who have succeeded and how they did it.)

A big thank you to my persistent virtual assistant Lori-ann for making umpteen phone calls. I now have an appointment at the Riverside Heights Dental Group – which appears to meet all three requirements – next Wednesday at 11:15am.

Fingers crossed!

Recently I discovered a quite acceptable alternative to my favourite beverage, an iced mocha: chocolate-covered coffee beans! Popping a few of those yummies in my mouth was way easier than going out for a cold beverage. They were on the verge of becoming addictive until…

I bit into one that seemed as hard as a rock. It felt like a jagged piece scratched my gum, which I was aware of when I ate but I didn’t think any more of it.

A few days later the apparent scratch was still bugging me. I stuck in a finger to feel for the scratch and, much to my surprise, a tooth wiggled like a loose tooth. Huh? I didn’t dare try again to confirm in case I caused more damage. But, I had a sinking, panicky feeling that I had cracked or broken my back molar. Up until now, most of my dental work in my thirty-fifteen years has been done in hospital under general anaesthesia – an experience I have absolutely no desire of reliving.

Monday morning Darrell called the wheelchair repair guy to cancel the pick-up of his power wheelchair and put the repairs on hold for another week. We had to get to the dentist and couldn’t wait around for the guy to show up.

Thankfully the 5 centimetres of snow had not materialized overnight and, except for wishing power chairs came with onboard heaters, we made it to the dentist without incident.

After poking around in my mouth, the dentist, without saying a word to me, went out to Darrell to deliver the news. After living this game for 45 years, I should be used to people, particularly medical professionals, not speaking directly to me. But, it still hurts, still stings. I was on the verge of tears.

Just because you don’t understand me (due to a lack of even trying) does not mean I do not understand you. Speak directly to me, especially when it concerns me and my health.

I called for Darrell and we quickly corrected the dentist’s uncertainty of me being able to understand him.

The verdict, after four x-rays, which is not easy with shaky cerebral palsy and an over active gag reflex: one broken tooth and one cracked tooth. He was able to remove the broken hunk. Now I need that tooth crowned or extracted, and the other tooth filled or crowned. The Ministry does not cover crowns, of course.

i now need to find a dentist who can do the work in the office; again, tricky with athetoid cerebral palsy. Otherwise I face a hospitalization, which I really want to avoid if at all possible. I am all for facing one’s fears, but some are meant to be left alone and, based on previous experiences, being in hospital can be left in my distant past.

I have learned to stick with my coffee in cold, liquidity form. It is less expensive and less terrifying that way.

With the rest of the technologically innovative world, I am saddened by the passing, today, of Steve Jobs due to pancreatic cancer.

Damn cancer.

I have written many posts on how the iPad changed my life in a relatively short time; on how the iPad gave me an affordable, acceptable and cool communication device and how that has further opened the world and opportunities to me.

But one intended post I didn’t write – partly because I didn’t know how to express my sentiments and partly because I thought I still had time – was a thank you to Steve Jobs for his innovative vision and to the Apple Development Team for turning his vision into reality. 

Steve, your iPad gave me something that no other device has: a way to communicate with those who are not familiar with my unique accent Glenda-ish. I cannot find the words to express how grateful I am for that; something which others may brush off as insignificant, but, for me, is a life changer and hugely contributes to my independence.

And, I am not the only life you have changed with the iPad and other Apple devices. Because you were visionary enough to include accessibility in the product development phase, rather than as an afterthought, many people with disabilities have benefitted and have had their life changed.

For this, I thank you, a little too late. I just hope you knew, somehow, before today.

Thank you for your vision, for living your passion and for changing the world in the ways you did.

You will be missed.

(Please excuse any typos or other errors. Typing through tears  is difficult.)

While responding to a message in Facebook from a friend, a text chat message popped up:

“hi auntie glenda”

Auntie who? Oh, right, that’s me!

The message was from one of my young nieces now on Facebook. While we chatted about going camping, roasting marshmallows and shopping for makeup, I realized this was the first conversation I had had with my niece.

Every other time we’ve been together, which I can count on one hand with a couple of digits leftover (the tough part of having family spread out across Western Canada), a third person was needed to translate Glenda-ish for when I did say anything, which was typically little.

She and I now have a way to develop a connection and be “auntie and niece”. The most impressive aspect – and for which I am thankful – was she initiated the chat herself. A high water moment ensued while typing.

Auntie Glenda needs to brush up on near-teen conversation topics so as to no come across like she is playing Twenty Questions.

One day at university, many moons ago, I was heading towards the residence’s main door as a man with a white cane was coming out. He couldn’t see I was there and I couldn’t step to the side. We collided.

i ran over his foot. He was understandably surprised and bewildered by what had just crushed his foot. I felt awful.

Jokingly he said I owed him my name, at least, for running over him. A fair request I thought and I gave my first name.

Having been double-blessed with a significant speech impairment and a less-than-common name, he, of course, didn’t understand it, even after several attempts.

Since he hadn’t seen me in my scooter coming at him, whipping out my low-tech, no-battery-required alphabet card would have been futile.

Jack began saying the alphabet, “a b c d e f g”

“Yes.”

“G? Okay. a b c d e f g h i j k l”

“Yes.”

“g l?”

“Yes.”

“a b c d e”

Five minutes later he had “Glenda”. We stayed on a first name basis. After a brief conversation of yes and no questions, he limped off on his way to class.

Since then I have given people with white canes and guide dogs a wide berth. I wasn’t avoiding them, not exactly. I was taking the easy route while minimizing inflicting personal harm.

Fast forward to a few weeks ago: while in Mississauga for work, I had the opportunity to meet Jennison Asuncion in person – a meeting I was apprehensive about because he is also visually impaired. I wanted to avoid running over another blind man.

Like so many relationships nowadays, we met somewhere online – Twitter, a web accessibility forum or elsewhere – at an unmemorable point in the past. Technology makes our disabilities compatible while interacting online.

It was the face-to-face interaction I was unsure about. However, Jennison was amazingly good at understanding Glenda-ish and, because we already had a certain degree of familiarity, of intimacy, we had a meaningful conversation.

When he did get stuck on a word or when I wanted to give a somewhat longer response, I turned to the Proloquo2Go ap on my iPad and used the speak feature for the first time. As online, this iPad ap worked great in bridging our two disabilities.

Thanks to Jennison, I now know I am able to communicate with individuals with white canes or guide dogs. Future collisions of disabilities will be mitigated.

If I ever pass through this World again, I am coming back as a foodie — one who handles a knife and a fork with surgical precision to saviour each delicate morsel.

Much of our culture involves gathering with friends and acquaintances to enjoy a meal together. Depending upon the degree of friendship, this isn’t an enjoyable, relaxing activity for me. I am extremely self-conscious about how I eat. I am not graceful, and, sometimes, I am messy. I know that.

Over the years I have discovered some foods that are relatively Glenda-friendly: forkable pasta, like tortellini, penne and ravoli, are great; fish is also good because it breaks apart without needing a knife. Soups, forget it. Rice is easy to choke on, which tends to freak out people. Greek salads are fairly easy; green salads not so much.

In the past I was quite skillful at opting out of such gatherings, unless with close friends. More recently I have been trying to force myself out of that pattern, no matter how uncomfortable.

While in Austin earlier this year, a group of friends headed to a nearby burger joint. The whole way there I was dreading the meal. How was I going to manage a slippery, sloppy, overstuffed burger? (Not the kind in a tinfoil wrapper from the food court.) I was never relieved to find Grilled Cheese Sandwich on the menu!

Thank goodness iced coffees are all the rage right now; they are drinkable through straws without risk of burning my mouth. It makes “going for coffee” a nice starting point when getting together with new friends.

Disability – temporary or permanent – can befall anyone at any time. Successful Online Business Conference (SOBCon) co-founder Liz Strauss discovered this at the most inopportune time.

She lost her voice hours before giving her closing keynote at the sold out event. She tried everything; even mainlining tea laced with honey did nothing.

I now more fully understand her tweet to me – earlier that day -that she was sad that I was not there.

Had I known her circumstances, I would have gladly offered a few suggestions based on experience.

In her situation, I would not have not recommended my favourite iPad communication app Proloquo2Go only because it is a little pricy for a day or two. For an extended voice lost, definitely.

Instead, I would have suggested the free text-to-speech app Verbally. This free, easy-to-use app would have saved Liz from using Post-It notes to communicate face-to-face. 

Surely someone from the SOBCon family would have lent Liz their iPad, at least during the socializing times, so that she could easily communicate and impart her wisdom.

To deliver her closing keynote, my suggestion would have been the text reader TextAloud – the free 15-day trial would have been sufficient.  With this handy piece of software, she could have written her keynote, tweaked the pronunciation and pauses,  and then saved it in one of many audio formats to be played on any laptop. (TextAloud is also great for proofreading.)

The technology really is that simple.

However, I love the solution that Liz did come up with. After several hours of fretting what to do, she grabbed a flipchart pad, disappeared into a quiet room and wrote one thought on 27 sheets of paper. Twenty-seven volunteers then read aloud Liz’s words.

Sometimes the simplest solution is the most effective, the most powerful.

In my last post Wanted: AAC Role Models, Leslie Porter asked a question that I feel deserves a response in a separate post rather than being buried in the comment section:

I am appreciative of your article. I have a 15 year old daughter who has athetoid cp as well. We have read your book and she could so relate to many situations. She has had an ECO 14 device for years but getting her to use it has been difficult. We got an iPad and Proloquo2Go last year or so but she is so reluctant to use it so she sticks with talking to close friends and family and being quiet in new settings. Just last week she said she would like to “talk more” but I think having the iPad as a viable option to her speech (which new people have a hard time understanding as you well understand) would really help but she needs safe opportunities and role models to get to a point she is comfortable using this. Any suggestions?

Leslie, thank you for asking such a great question! Hopefully by responding in a separate post, it’ll spark a lively discussion and others will offer suggestions in addition to the ones I’m about to share based on my own experience.

From my experience over the last few years, I have realized how much of a factor confidence plays in spontaneous face-to-face communication. Confidence that what I am about to say is relevant to the current conversation; confident that it doesn’t sound stupid or inappropriate. And that confidence is built over time.

As you mentioned, communication requires feeling safe. On my recent trip to South by Southwest (SXSW) in Austin and then the 26th Annual International Technology & Persons with Disabilities Conference (CSUN) in San Diego, many of my online friends who I had previously met face-to-face were at SXSW. There was already a sense of familiarity and intimacy with them. Communicating with some meant using the iPad for the occasional word when they were stumped on Glenda-ish; with others it meant using the iPad for the majority of the interaction. Either way was fine, and each successful exchange gave my self-confidence a little boost.

When I arrived at CSUN where I knew relatively few people, I was feeling confident in using my iPad for communicating. Also, I found the CSUN environment and people very accepting. i felt safe in using my iPad to communicate, which further boosted my confidence.

Leslie, I would suggest encouraging your daughter to begin using the ECO 14 device or the iPad (the situation might determine which device is more appropriate) with family and close friends – although I realize that may be clumsy if they all already understand her dialect. It may take a conscious effort to encourage her to use her device of choice. Reward the small successes. Then gradually increase interactions with people less familiar with her, and try other kinds of interactions like ordering a burger in the food court, making a hair appointment or whatever.

If your daughter uses the grid view in Proloquo2Go, add teen appropriate language, like her favourite movies, bands or current hotties and any relevant local words to help facilitate communicating with her peers at school. If appropriate, involve her in the process of adding the words. If she can do it herself, awesome!

As for role models, that may be a little more tricky to find. Many of the YouTube videos are of younger kids with autism or cerebral palsy using Proloquo2Go, which may not inspire a teenaged girl. My Twitter friend Leanne Stewart did come across Lyn Levett who uses her iPad with her nose.

On her blog, Katilea shares her journey living with Ataxia. The iPad with Proloquo2Go has been a life-changer for her. Kati is a whiz at creating new pages in the app.

I have shared many of my iPad adventures here on this blog, and  I now see capturing a few of those adventures on video would benefit others. I will work on that.

Other places to find willing role models might be local disability groups, rehab centres, employment programs for people with disabilities, colleges and universities.

Hopefully my readers will have other suggestions for finding role models using the iPad for communication.

Leslie, your daughter’s desire to “talk more” is the first step. Encourage her to communicate in safe situations. Gradually those situations will grow as her confidence increases. Role models, close by or from afar, will help teach her to communicate in this manner, in ways teachers, therapists and parents can not. Follow the pace she sets for her journey.

Good luck and please let me know if you have any more questions.

On my recent trip, I was very grateful for my iPad and the newly acquired ability to communicate with anyone:

• While waiting at the Dallas airport for the delayed flight to Austin, I chatted with Steve who was also on his way to South by Southwest (SXSW).
• My first night at SXSW, I had supper with my friend Todd Jordan. It was one of those meals when more talking than eating took place.
• Wandering the SXSW Exhibit Hall, I had a nice chat with Patti Hosking from BlogWorld Expo.
• While waiting for the airline customer service rep to arrange an accessible hotel for my unscheduled stopover in Phoenix, I was able to tell her I was not deaf; there was no need to communicate via notes to me.
• Exploring the 26th Annual International Technology & Persons with Disabilities Conference (CSUN) Exhibit Hall, I was able to ask questions about a particular device on behalf of a friend.
• After my CSUN presentation, I ordered celebratory iced mocha and then tweeted:
  GlendaWH: Scored an iced mocha. Loving my ipad and proloquo2go! #csun11 17-March-2011
• At the Holiday Inn, I was able to arrange for the accessible shuttle to the airport.
• And the list continues…

When I had realized how much more I was able to interact with people not fluent in Glenda-ish, the questions struck during a quiet moment at CSUN. How had I travelled and attended conferences before my iPad? How much had I missed out on by not having a communication device? Who had I missed interacting with? What opportunities had I missed? How different might high school and university have been? Might I have been successful in finding a job after graduation?

Yes, previously, I used my alphabet card and typed many notes for communication. Those methods worked for brief encounters. But, they didn’t facilitate on-the-spot, in-depth conversations.

I then realized that CSUN is likely the first time I had seen others using various communication devices. I am nearly 45 years old, with a significant speech impairment, and this is the first time I have seen this is kind of device in action? How is that even possible? Something is definitely wrong here.

Prior to CSUN, my exposure to communication devices, to augmentative and alternative communication (AAC) consisted of:

• In elementary school, Randy was several years older than me and had cerebral palsy perhaps a tiny bit more involved than mine. At one point he tried a large, clumsy “voice box” with a very limited vocabulary. He soon went back to his large alphabet board.
• In university, Carla was voiceless due to a car accident. She used some kind of small device with which she laboriously typed messages onto a small screen.
• More recently I have briefly met AJ Brown who is also voiceless and uses a Light Writer device. Sign language is her primary means of communication.

That was it!

Of course, there had been the occasional attempt by counsellors and therapists to get me to use such a device, but I was not interested. I was scared people would stop trying to understand me when I did talk. I didn’t want to be stopped from having my own voice from being heard. And, I wasn’t keen on lugging around yet something else that made me different.

One reason for my lack of interest in using such a thing was I hadn’t seen others communicating in that way. For a skill set that relies heavily on observing and learning how others around us communicate, I didn’t have anyone using a device to watch and learn from. Nobody on television or in the public eye communicated in that manner.

Where were my role models?

That was until I became aware of physicist professor Stephen Hawking who uses a text-to-speech synthesizer to give lectures. And, last year, when movie critic Roger Ebert, who loss his jaw, and subsequently, his ability to speak, to cancer, his interview on Oprah further opened my eyes and my mind to the possibility of using a communication device.

The launch of the iPad combined with the Proloquo2Go app came along at the right time for me. The iPad’s coolness factor also prompted me to give the device a try for communicating.

The key here is that the idea didn’t come from a teacher, counsellor or therapist, but rather from a desire within myself – a desire for a way to communicate with those beyond the limited number who understand and who are willing to try to understand Glenda-ish. That desire plus my initiative to identify, for myself, individuals who I could relate to in terms of communication needs – to identify role models – plus the launch of the cool iPad created an opportunity for me to embrace using a device for communication.

I am grateful for that opportunity and for the changes in my life it has made in such a relatively short time. I strongly believe that for young people with speech disabilities and for adults who lose their ability to speak to experience the full benefits of communication devices (suited to their individual needs), they need similar role models to guide them and teach them to communicate in this way.

For this to occur, successful individuals who use communication devices need to become more visible, in the public eye, on television, in advertising, in education – everywhere! I’d love challenge those who are in positions to make this happen to, indeed, make this happen. Let me know how I can be of service.