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.

A little background here. I posted previously that I had volunteered at the former Institute of Technology and Learning with Dr John Slatin, and that one of the reasons that I entered the Knowbility website accessibility contest was to be able to connect with Knowbility and Sharon Rush.

Sadly, John Slatin passed away from Leukemia while we were in Washington, DC.   John had launched my speaking career and my first speaking opportunity was for his class on Web Accessibility.

He had people who had different kinds of disabilities talk about what it was like to have their disability and how the computer could help the them.

I spoke to his class as the representative for people with cognitive deficits and I spoke about my injury, how I had gotten better, and how the computer could help me.  John told me that the least is known about cognitive deficits and accessibility relative to issues for blindness, deafness, and physical impairments.   So I was excited to share my experiences and shed as much light as I could from my experience.

Back to my talk with Glenda.   What I did not know until I spoke with Glenda at the Pit Rally was that she audited John’s class on Web Accessibility and that she was there when I gave my first speech!   She was not a student but was working at the University of Texas at the time and John had invited her to attend.

She explained that she was the accessibility person then.   It was her job to make documents accessible to students and faculty (university wide) and she worked with John Slatin (who was the head of the Institute for Technology and Learning) on this issue.   As I recall, one of John Slatin’s many accomplishments was that the University of Texas became a leader nationwide with respect to how many of its documents were accessible.

Glenda told me that she was so pleased to see me and that she was awestruck by how much I had recovered since she saw me speak at John’s class in 2000.   What a gift she gave me to reflect back to me how much improvement I had made.

Glenda shared with me what it was like for her to hear me speak over 13 years ago.

I had prepared my speech with my speech and language therapist, Liz Joiner, and many, many friends helped.

I had practiced it with rehabilitation professionals at St David’s Hospital where I was doing my outpatient rehabilitation at the time.

I remember that I had to read my speech because I did not have the skills to do more impromptu from notes like I had with speeches that I had given in my former job as an Economist at the Environmental Law Institute.   I was also speaking about my own experience, not economics.

Glenda shared with me three impressions of my speech that I wanted to share with you all:

1)  She told me that although I had cognitive disabilities and although I was explaining them during my speech, she would never have known that I had a cognitive disability from the speech itself, independent of what I was telling her.

Wow!   That reflection was fascinating to me and frankly, hard for me to grasp.

You see, I was very aware that I had cognitive disabilities when giving it.

So aware that even though I wrote the speech with many people and practiced it at home as well as with professionals, I did not know what I was saying, unless I was reading and speaking the words that I had written.

2) She told me that I had said to the audience that I would take question and answers, but I did not know if I could answer them in real time.   If I could not, I would write them down and answer them by email.

She said that although she could not tell that I had deficits when I gave my speech, she said it was obvious to her that I had deficits that I had deficits when it came to the (simple) questions and answers.   I was not able to recall my experiences with the computer when the undergraduates asked me about my experiences.   At the time, I could not use the computer for more than 15 minutes and not after 7 pm, so my experience was very different than those of 19 to 21 year old students!

3) She told me that one of the things she learned from me was that movement on computer screens did not work for me.  (They would give me an almost instantaneous headache and/or made me dizzy and sometimes irritability.   I would almost physically run away from the computer if I stumbled upon movement on a screen.).   She said she has told my story over and over to her clients ever since she saw me.   (By the way, I can tolerate alot more on the computer screen now, but I told my team that I still couldn’t tolerate movement on a website.)

I know this post is long, but I want to share my reactions to what Glenda told me.

1) I was getting shivers up and down my back when she shared how much I have improved since then.   Its always nice to get that reflection back.

2) I cannot begin to put in words how happy it makes me to know that even though I couldn’t do much then because of my disability, that something I shared stuck for her and that my words have been passed on to educate others interested in computer accessibility for people with cognitive deficits.

3) Her share helped me know that sharing about my disability, and being that vulnerable, has helped others.   That is what advocacy is.  Its raising awareness.  Raising awareness means that others can come up with better solutions.

4) Knowing that I have helped others in this way with my words, makes me want to share more, especially now that I can articulate more about the computer and my deficits.  It also helps me focus my mission and my advocacy  which I have difficulty focusing and articulating on my own because I learn slowly and learning slowly may mean I never get to the place where I can focus why others should care.  In addition, I forget what I already have learned before.  So often its not until I am reminded of a problem I have been having (by having it again) that I can articulate it to allow others to be able to help me.   I don’t know how either my aphasia or my apraxia which I have had rehabilitation on fit in to these articulation issues.

5) And lastly, its incredibly challenging to be vulnerable about one’s deficits with a cognitive disability.   Its hard to be vulnerable about one’s weaknesses no matter what they are.  Its not something we are trained to do.   We usually want to hide them from others.   With a cognitive disability, its worse.  Someone who can talk quickly or someone who claims more authority is likely to be able to respond quicker than I can.  It may be days before I can come up with my opinion and in the meantime I may do agree with them, unintentionally, because I can not think of what to say and I want to say something.   And who wants to admit that their brain is not working.   Talk about vulnerability!   ( I am realizing this is a whole other topic…. and I will come back to it later and go into further detail)

6)  And one more thing about her share while I am thinking about it.  I know from years of experience that most say that they cannot see my disability.  I have learned, though, that people CAN see my recovery (or re-wiring) and they sure get the increased functionality that I have had, like being able to raise a child now and being able to drive again.

I have seen videos of previous speeches, so its not that I haven’t seen what I looked like to others.   Having a person reflect back their experience is much more meaningful to me than the videos though.   As I have though about what Glenda shared with me, I think its because her experience was so radically different than (what I remember on my own) about that talk.

I was very aware of how compromised I felt at that talk.  I still thought of myself as an international speaker who could talk about technical and complex subjects like my latest research on environmental economics.  What she shared is that although I had lost that person, she could not see the difference between my own self-concept and the reality of my post-injury shattered sense of self that I was rebuilding during my speech.  She may have imagined my vulnerability, but could not experience with me.  (Although she may have gotten an inkling of my increased vulnerability when I went to Q and A.)

7) And to finally finish, its always nice to hear about my recovery when someone reflects it back to me!  Although I am already motivated to get better on my own, its motivates me further and spurs me on.  Good job is such a wonderful encouraging thing to hear.

 

One thought on “The Value of Revealing My Deficits

  1. Anne, thank you so much for sharing this story. I was deeply inspired by our conversation last week. Realizing that I was present for your first speech (post injury) and seeing how much you’ve accomplished since then…I was blown away. Once again you’ve taught me an important lesson. Years ago you taught me that accessible web design can break down barriers for people with brain injuries. You personalized the situation for me. To this day, I still think of you when I describe why it is so important to not have flashing, blinking, moving content on a page.

    And now, over a decade later, you’ve shown me how truly phenomenal our minds can be. Your domain says it all…our brains are plastic. With exercise and creativity you’ve opened new pathways in your brain.

    Earlier this year I had goosebumps as I listened to Lisa Seeman explain about the ground breaking research at the W3C on Cognitive and Learning Disabilities Accessibility. http://www.w3.org/WAI/PF/cognitive-a11y-tf/

    I believe, with all my heart, that the next major accessibility innovations will come out of research on cognitive accessibility. And that these discoveries will not just help people with disabilities but will actually be major breakthroughs for our intellectual abilities as humans.

    Last, but not least, the entire time we were talking at the http://www.knowbility.org/ event I was tingling all over. Synergy, passion, inspiration, connection and the almost tangible presence of John Slatin. I firmly believe that even though John left us in 2008, his love for accessibility lives on in each of us.

    Posting this on John’s birthday is a wonderful way to celebrate all that you have achieved as well as honoring a man who had such an amazingly positive impact on both of us.

    xxoo,
    Glenda

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