People seldom improve when they have no other model but themselves to copy - Oliver Goldsmith

Empowerment from Role Models

One of the many things that I found empowering working with my Team AxIS and my advisor, Joseph O’Connor was that they used the computer so, well, easily.

I realize the descriptor easily may sound like a funny use of terms.  Of course designers, developers and usability experts would use the computer easily!

And, especially when compared to my computer use.

Because my team knew how to use the computer to create the website that we talked about, I could watch them do things in a short period of time.  What they were able to do was so far beyond my abilities.  I could literally see things that we talked about taking shape before my eyes.  Sometimes it wasn’t quite that fast.

However,  my team was in India, and their day was my night.

So sometimes they would work on the site while I was sleeping.

And so I would wake up and start my day and when I looked at the computer,  there would be an email to open.

And the email would show me suggestions that my team had for how to make the ideas we talked about the night before take shape.

Some days it seemed instantaneously.

Some days it might take longer.   Often I was just getting used to an idea when it was already mocked up.

Just to say something I have learned about myself and my decisions is that I definitely have delayed processing post-injury and so it often takes me awhile to get used to an idea.   I may have had slower decision-making prior to my injury, its hard to know.   What I do know is that my decision-making is slower post-injury and so getting used to that and working around that is part of my “new normal”.

Back to my website and my team.  From my point of view, my new website began to take shape very quickly.

To me part of the empowerment that I felt from participating in the Knowbility Open Air Contest, was that watching my team gave me hope that one day I will use the computer much more easily and much faster like I could see that they do!

I was an early adopter of computer technology before my injury and I know the benefits that the appropriate use of technology could give me to enhancing my productivity and quality of life.

However, with my slowed learning following my injury and the difficulties I have had with the distractions of the computer as well as the trade-off I face in terms of energy loss from concentrating in front of a screen, and countless other issues that I don’t have a grasp on yet,  I have had a difficult time with experiencing gains from the computer.

Watching what my team could do not only motivated me and gave me hope just by seeing what they could do.

They also broke down for me new learning.  I would get an email saying these are the steps you need to talk to do this.   In others words, they gave me procedural information that I could follow.

First you do this, then you do that.

And I can follow simple instructions that tell me what to do and when.

Often I cannot break things down for myself.

But if the instructions are good and precise (and do not skip any steps), then I can follow them.

And if I cannot follow them the first time, I can try again and again until I learn them.

And I feel so empowered when I am successful at doing step one and then step two and then step three.

When I have hope because I can see where others are able to do and when I have a complete step by step approach, I can use the computer (or mobile phone or ipad).  And I can experience benefits of technology.  And I feel empowered.

When technology disempowers me, it disempowers me much more than it disempowers someone without my cognitive issues.

When I cannot learn how to do something new on the computer, either because their are implied steps or there is an assumption of knowledge that I do not have, or because I am unable to break down the steps myself, I experience frustration, just like others.

What may not be like others however is that I am conscious that I am dealing with a lot of increased frustration in just going about the simple tasks of my day.   And in order to get through the day, I am already pursuing strategies to keep my daily frustrations from getting me down or getting me depressed.

So going on the computer to help me, and ending up with increased frustration, is often a risk that I cannot afford to take in my day, if I am already having a tougher time in my day than I am used to.

Or if my brain is not having a good day.   In other words, if my brain is having a harder time performing simple tasks that I normally can do.

What my team did for me was by help me by pass much of the increased frustration that working on the computer can do for me.

They were motivated to help me, and they wanted me to succeed.

They broke it down for me.

Step one is this.

Step two is that.

And they modeled for me where I want to be one day.

And when I couldn’t do a task they suggested, they broke it down differently for me.

Together we found a way for me to increase my appropriate usage of the computer.

Everyone needs models outside of themselves to inspire them and help them with the steps they need to go where they would like to go.

I needed them before my injury!

After my injury, I need them more.

Thank you Team Axis and Joseph O’Connor and to all those at Knowbility.

Thank  you, thank you!

 

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2015 New Year

2015

Happy New Year!

I am learning how to use my new, more accessible, website.

I asked my husband to teach me how to post pictures.  I needed reminding about where to find pictures, and he looked and found 3 pictures about the new year.

Eventually, I choose this picture.

I liked the the technological aspect of the New Year.   Based on the end of last year, I think I will be learning about how to increase my use of technology this year.   Working with my very knowledgeable team during the Knowbility Open Air Contest taught me many new things about accessibility and about my website.   It will take me practice to learn some of the new skills such as writing more accessible posts, even now that I have more of an idea of the resources that can help me with that.

The other reason I choose it was that the New Year has started in a rather blurry fashion for me, once I thought about it.   I liked that the 2015 in this picture is not sharp and distinct but blurry and less distinct.

You see, I ended 2014 feeling very empowered by the work on my website that my team and adviser and my husband and I did.   My entire team moved my website forward and helped me in ways that I did not even imagine they could, prior to the contest.

Perhaps anyone working on a website would benefit from others teaching them better ways to express themselves on their website and reflecting back to them suggestions for improvement.

For me with a brain injury, learning to pay attention to others feedback and incorporate it into my world view has been an essential part of the skills I have learned in rehabilitation and outside rehabilitation that have helped me recover as far as I have.

So having my entire team reflect back how they saw my mission and my logo and my site was very powerful for me.  The most meaningful thing that I can say is that I started the contest with a logo of a brain with a band aid on it and ended the contest with a logo of a healthy, growing brain.   I felt empowered in many ways, but most importantly I no longer identified with a brain with a band aid on it and instead I realized that I felt a sense of integration and wholeness, such that I could identify with a healthy brain.   That is what my journey has been.  And once a integrated and whole brain was reflected back to me, it was obvious to me that that was the way I felt about my journey and my brain, now.

Wow!

I felt incredibly empowered!

And then, the blurry part of 2015 that is in the picture came next.

Right at the end of December, my husband got the flu.  We had a nice New Years Day with friends and family, and then sickness and flu tore through our family–low energy, congestion, fevers, and a lot of work compensating and getting each other well.

The lightest way I can it is that we have been practicing another set of skills this New Year.   We have been practicing resilience skills.

Some of my medical resilience skills are:

–focusing on trying to get well as quickly as possible,

–focusing on keeping things from getting worse once you are sick,

–recognizing that “this to shall pass” and getting as much rest as one needs,

–being easy on oneself while one is sick;

–in other words, not try to push oneself;

–re-arranging any activities and plans that are not critical (bill-paying is critical);

–my cognition was much lower with my congestion so re-arranging activities was critical for me.

I wrote a draft blog the second week of January, and realized I should postpone working on my blog until I had more cognition and more perspective.

So I am inching my way into starting 2015.

But my sense of empowerment from participating in the Knowbility contest has kept my mood high despite not feeling well and the many tasks helping my family while they weren’t feeling well.  And helped me cope with the many rainy and cold days that Winter has brought (unusually many for Central Texas).

And when my son came down with strep throat on Friday, I realized that January may be a much tougher month than I thought.

But I still think 2015 will be a good year!   And a year of increased new learning of technology.

And now I will go learn more about how to write text that is more accessible with subheads and how to edit the alt text for the picture now that I have written my blog.   One step at a time.

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Joyous man with arms raised sitting in wheelchair held aloft by people in very large concert audience

Accessibility is So Empowering

Last week, I attended a Skype meeting of my team for the Knowbility competition.   I spoke with members of my team (team Axis) and my adviser Joseph O’Connor about where we were in terms of development of my website, what had been done recently and did it work for me, and questions that I needed to bring up with the judges at the Pit Rally at Knowbility the next evening.

I found the meeting very empowering and supportive.   I learned from all of the members of my team about the kinds of things they were thinking as they were developing the website.  I learned about how a screen reader (accessibility tool for a person who is blind or cannot read the screen without assistance from a machine) would read the site and what coding needed to happen for a screen reader to read my request for left sided navigation.  I learned about font size and color contrast and the concerns that needed to be addressed there.  And I learned about how they saw my site which helped me understand more about my own thinking about my site and what’s not articulated in the text or architecture.  And I learned that I needed to know a lot more about what scientists knew about neuroplasticity before I could articulate it, and that even though I know what it is through my experience of it in my getting better since my injury that I don’t yet know how to talk about it very well, even though the increases in my neural pathways must underlie the increased functioning that allows me to be talking through skype with my team and addressing my teams questions and following my team and adviser to the extent that I am following them.   (And following them as much as I did made me appreciate how much I wasn’t understanding what they were talking about nearly as well in the last two calls!)

All kinds of information came together for me and I understood so much more about the concerns that they were already addressing to make my website more accessible.  I also had new learning about the state of the research (or lack of research) on design elements to address cognitive accessibility issues on websites.   And I began to understand just how much thought and effort my team and adviser had been doing already and were continuing to do to make my website as accessible as possible to people with cognitive disabilities.  I felt so supported and I felt so blown away by the work that had been done and I learned from everyone.  I felt like my head was about to explode (in a good way) with new ideas and connections.   I literally felt that I could feel my neural pathways strengthening and branching out and connecting and growing.   I do not know how correlated my experience of what my head felt like with what was actually happening to my neural pathways.  Hopefully someone more knowledgeable than I can tell me about that correlation that happens between brain change and learning and whether some aware people can indeed feel it or not.

Maybe I am just willing my brain to grow and the visualization that I am doing by willing and imagining it, promotes the growth.

Or perhaps since I know that my neural pathways have grown and developed in the past, I know to believe in brain growth.  Perhaps it will happen because it has happened before.  Perhaps, there is not a correlation to what I am feeling in my brain and my pathways growing.   This would be an interesting question to know the answer to!

I would like to say more about all the concrete reasons that I felt empowered, during that call.

But that will have to wait today because I need to limit my time on the computer and I have other things that have to get done today.

I do remember having an experience before my brain injury where I thought I could literally feel the pathways of my brain growing after new learning, when they finally started to develop (which seemed to take longer than I expected they should take).

So I will share my memory of that experience with you to see if you can recall a similar time when you knew you were learning something new in a way you hadn’t know it before.

I took calculus (or was it linear algebra?) in the summer time at the University of Texas to prepare for graduate school in economics.

Since it was summertime, the course moved quickly and we had three tests in a short period of time, maybe six weeks, maybe eight.

I found nothing intuitive about the math I was trying to learn.   In addition, the graduate student leading my section was very bright but his explanations of the work were not helpful to my own learning.  So I had to study really long hours and really intensively.

I remember feeling after the taking the second exam, that I finally was understanding the concepts that I had been tested on in the first exam.

And I felt that I could feel the pathways grow from the new learning (although I would have said it was just my brain growing at that time).   I could look back at the first test and understand all these problems that I had answered more by rote than anything else.   And now I could connect them and understand them!  Suddenly, I knew the material and could begin to apply it!

That is a description of what the experience felt like before my brain injury, and its how I felt after my meeting last week with my team and adviser.  Except last week the experience was even bigger.   During our call, I began to understand what my team was thinking about it a much more expanded way and how supportive it was of my own mission with my website.

How did I feel after our team meeting?

Here’s the visual that I want to leave you with.

When I watched the live streaming of the annual Accessibility, this Fall, I was impressed by a picture that one of the presenters showed about what accessibility is.

It was a picture of a woman in a chair (wheelchair) being held up off high off the ground and supported by a group of people (who did not need to use a chair to help them stand).   It was a very empowering photo of possibility when everyone works together to support someone who is differently abled.  (Please see bottom note now that picture has been added to this post.)

I looked at that picture and thought, I want to feel that kind of support around the computer and my cognitive deficits that limit my abilities.

After working with my team last Wednesday, I felt (and feel) what I imagine the woman in the chair felt.

During our team call, I felt lifted up.

During our team call, I felt supported (even more than I had already felt).

And honestly, I felt that together, the sky is the limit!

Accessibility is so, so, empowering.

—–

Bottom Note:

I came across my notes from the Accessibility Conference and found that Elle Waters had shown this picture and that it came from the Huffington Post originally.   Elle Waters sent it to me so that I could use it on my blog.

Two things I want to share that I realized when I re-read my notes and saw the picture.   I had remembered the person being lifted up as a woman, like me.   Looking at the picture, I believe he is a male.  I liked that in my memory, the person could be anyone or any gender.

And, I wrote down in my notes something important that Elle Waters had said when she showed the picture and is worth repeating.   I will paraphrase her from my notes here.   She said that true accessibility is about the crowd experience of lifting someone else up.   Its not about the isolation and frustration that the person without accessibility experiences–frustration or difficulty with new learning, or lack of access.   Its about everyone feeling lifted up by the access.

And that is what I feel and I believe that the rest of my team has felt as we have improved my website and learned and made the site more accessible.  We have all felt lifted up.

And we have all lifted each other up.

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The Value of Revealing My Deficits

I attended the Knowbility Contest “Pit Rally” last Thursday to ask questions about the contest to the judges.

(If you haven’t seen my previous posts about the Knowbility Contest to improve website accessbility for non-profit organizations that I have entered my website in, please look at them. (I haven’t yet figured out a better way to reference them, but its on my list for things to cognitive challenges to learn about how to address!))

Several others from the accessibility technology community were there.

I got into a conversation with a woman named Glenda Sims who currently works for a company called Deque Systems.
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New Learning and Website Design

I have written about the contest (the Open Air Rally) that I am participating in through Knowbility to make my website accessible.

We are in the final two weeks of the competition.  Its very exciting.

I had a great meeting with my talented and knowledgeable development team Team AxIS from Cognitive Interactive with my team leader Antonia and the lead developer Krishna and with my esteemed team adviser Joseph O’Connor on Wednesday night last week.
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The Gift of New Learning

I have had an incredible week of ups and downs.

I am going to choose to focus on writing about one of the many ups and what I have learned and gained this week.

Simply amazing!

My son turns 6 next week, and I am just awestruck by that fact.

All the years that we waited for him to come to us, and now he is turning 6!

And its just fascinating to watch his brain develop and his cognition develop.
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Happy Thanksgiving

I started writing more about automaticity last week.  But, I am not ready to post it, yet.

So my post today is Happy Thanksgiving!

I love Thanksgiving.

I love the food and the time to enjoy a good meal together with family and friends.

This year, we are going out for Thanksgiving lunch.

I plan to cook pumpkin pie later in the weekend.

I was reminded about my post last year about Thanksgiving when I looked for my pumpkin pie recipe.

There was so much going on last year for me that I forgot to remember to look for the easy pumpkin pie recipe that I make.

This year, I went straight to my recipe book and found the easy pumpkin pie recipe with ginger snap crust.

Yahoo!

Its been a tough year, but I am doing much better now.

And, as far as Thanksgiving goes right now, it is all good!

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Automaticity Part 2

I introduced the word Automaticity in my last post.

According to Wikipedia, learning, repetition and practice eventually allow the brain the ability to automatically respond.   An automatic response means that the mind is not trying to figure out the how to do it part (any more) of doing a task.   The how to do it part becomes automatic.  The mind just responds or acts out of habit.

You may not have even known that there is a procedural part and an action part of doing tasks. That is because by the time we are adults, most of the how to do it part is automatic.   When who to do something becomes automatic, its called procedural memory. When I had my brain injury, I learned that one of the connections that I had lost was procedural memory for a lot of everyday tasks.   I have had to relearn a lot of procedural memory in order to do daily tasks.
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I did it!

On Monday when I walked, I realized how glad I was that I had developed some awareness last week about my vision and integration, how my brain is changing right now and how to help my brain change during this transition through my vision exercises and walking.

And in reflecting about my increased awareness, I realized that I had more challenges on my plate this week then had even recognized that I had the week before.

It wasn’t just that I had more tasks to take on as a daughter, but also I needed to figure out how to increase my communication with my siblings and brother and sister-in-law in our collective tasks to help each other work together to help my father.
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Integration, Vision and Neuroplasticity

A dear friend from Washington DC who knew about my setback this summer called last weekend to see how I was doing and offer her support.  She left a kind and supportive message on my voicemail.

While walking that next day, I wondered how to describe concisely how I was doing when I got back to her.  In many ways I am better, my functionality is very improved and I feel well enough that I have begun the daunting task of seeing the doctors that I was not well enough to see this summer for followups.

In other ways, I am still struggling after the setback.
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