Inspiration and Accessibility U Schedule

Inspiration and Accessibility U Conference

Last month I wrote about learning to manage the ups and downs of life so that hopefully one moves in an upward fashion over time.

Everyone has ups and downs in life.  That’s normal.

What I have found is that after brain injury, the ups and downs often get exaggerated.   There are a lot more “downs” and its harder to get out of the downs because the cognitive and life skill tools that we have learned as adults are part of what got damaged.

What others have taught me in my recovery is that the quicker I can identify where I am in the ups and downs of life — in particular, whether things are getting worse of not , the better I can manage the ups and downs.

Managing ups and downs is a part of practicing medical resiliency.

I have been fortunate to have benefited from outpatient rehabilitation and visual training and some great doctors and therapists who have helped me recovery.  I know how tough my life was like after my injury and before I learned these resiliency skills, so I am very grateful for them.

Even with a “mild” traumatic brain injury I had problems with awareness after my injury.

I was aware of some of my post-injury deficits, but needed help developing awareness of others.

As I developed more awareness of my deficits, I was able to learn strategies to do to improve my situation.

As I got better, I was able to improve my problem-solving and new learning skills, which meant I might be able to adjust a strategy to the situation and generalize more about when to use a strategy.

So how does that apply to my life this month?

Well, when I wrote last month, I thought that I was getting my energy back after resting after my long preparation for my speech at SXSW.

What I learned after I wrote the blog was that I wasn’t doing as well as I thought I was.

Long story short, I realized that I needed more rest.

As you may know from reading my blog, I am prone to err on the side of thinking that I am ready to increase my load too quickly.

And I erred that way again.

Good to know that I am pretty consistent in erring on the side of taking on too much before I am cognitively rested as much as I need to be.

So I made use of my updated awareness and I made plans to rest more, do yoga, slow down.

May is a busy month for a mom, with end of school programs and preparation for summer camps and traveling to the beach.

So slowing down further is going the opposite direction than those around me.

That makes it even harder to do.   But necessary, nonetheless.

So I started to make a plan to take more time to do things I needed to do, get more downtime and more exercise and relax through doing yoga and stretching.

And then Sharron Rush, the Executive Director at Knowbility, a local nonprofit that does web accessibility emailed me.

She was putting together informal lunch time demonstrations so that conference goers could see how people with different disabilities used the computer at Knowbilitiy’s annual Accessibility U Conference.

She already had someone with blindness who uses screen-reader technology to read and tell her what was on her computer.

She wanted me to show and tell how I use the computer given my cognitive deficits.

This conference brings together experts from all over to teach different aspects of about how to make websites more accessible.   Seminars run the gamut from the nitty-gritty how to write code point of view to the big picture how to get one’s organization on board to how to all kinds of new learning about how different kinds of people interface with the screen.

I jumped at the chance to present for two reasons:

1) For me, I know that doing things that inspire me, whether I am in a down turn or on the tough part of the upturn of the ups and downs of life (or not) will help me persist on my path when its especially tough.   Its really hard to go through an extended downturn, and that is in fact when you need inspiration and support most of all, and that is often when its harder to get!

2) Secondly, Accessibility U has also been named John Slatin U, after my mentor John Slatin.   John launched me public speaking career about brain injury when he was the head of the Center for Technology and Learning there.   He encouraged me and spelled out the importance of it and healso through scheduling me to speak about cognitive disabilities to his class at UT in 2001.

So how did I honor my need to relax with the opportunity that I thought would help inspire me?

It required some thought and feeling my way into it and flexibility and problem solving with others.

But I did it!

I had to keep it in my mind that I was doing an informal lunch time demonstration.   Underline informal.

My first thought was to get someone else, maybe Glenda Sims, to interview me.

Glenda worked in accessibility at UT at the time I spoke to John’s class.

Unbeknownst to me at the time, she saw my first speech.

Glenda remembers sitting in John’s class thinking that although I was reading my speech, that there was no way to know that I had cognitive issues.

For me, I had never read a speech since possibly speech class in 9th grade.  Public speaking came easy to me before my injury!

And what was tough for me was that I didn’t actually know what I was saying in my speech, although I had written it with others and had practiced it at St Davids Rehab with a group of health professionals there organized by my speech therapist.

Glenda also remembers that when I finished my speech, I said I would take questions.  I said I would get back to people if I couldn’t answer the questions.

She recalls that I could not answer simple questions about my computer use that 19 year olds asked.   In other words I couldn’t apply knowledge at that point in my recovery.

Glenda said that the contrast between my speech and my question and answer was like night and day, and she could see my injury in the contrast.

I am pleased to say that my demo at John Slatin U went very well.

I shared Glenda’s story and what I learned with John then and what I know now.

I realized afterwards, that I also showed my recovery.

I was able to field questions from 20 to 25 professionals.

In contrast to 15 years ago, I could apply my knowledge and answer questions.

What a gift presenting was to me!

And I got lovely feedback from people who came.

And I got ideas for helping me with the computer.

It was very rewarding and informal and I was please to be able to share my knowledge to help others.

Public speaking gives me back as much as I give!

And because I could do a question and answer now, preparation took less out of me.   A win-win for all.


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SXSW 2015

I am speaking at SXSW

I am excited to be at SXSW – Interactive Festival here in Austin tomorrow.

For those of you that don’t know what SXSW – Interactive is its a large festival of smart and savvy people interested in technology and creativity.   I have noticed that over the last couple of years, more and more people have been talking about the brain and last year there was a panel on sports and the brain with Chris Nowinski and others.    Chris is a person with a brain injury who is also a leading advocate for sports concussion and a role model for me.

I proposed a session called “Welcome to Your New Brain: Lessons from Concussion”, and I was accepted!

Its the first time that I will speak to this type of audience and I am excited about that.

The talk is tomorrow.

Here’s the link for more information about my session (Tuesday March 17 at 11:45 at Austin Convention Center):

I plan to put information about it on my website and on this blog after the speech and on this blog, so stay tuned

Here’s  information about all Health and MedTech talks that are being held this year.    If you are interested, you can look up the other brain-related and brain-injury talks that are here this year.   Very impressive.



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Brain Injury Awareness Month

Brain Injury Awareness Day on Capitol Hill, March 18

One of the advocacy events that I loved being a part of when I lived in the Washington DC was Brain Awareness Day on Capitol Hill.    I have been working hard preparing for the event with a group called the Brain Injury Ambassadors Council.   We are a group of people with brain injury who are interested in raising awareness about brain injury and we have been working with the Brain Injury Association of America to this end.  Many of the members of our group will be present at the event, although I won’t be there this year.

Brain Injury Awareness Day is a tremendous opportunity to advocate to one’s Representative and/or Senators about the issues that are important to those of us who have experienced TBI.

Its also an opportunity to meet other people with traumatic brain injury and their families and to meet professionals people who are passionate about helping people with traumatic brain injury.    The first event of the day is an Brain Injury Awareness Fair where you can learn about what different organizations are doing to help people with brain injury including programs and treatments.     I will post a list of organizations that will be present at the Fair at the bottom of the blogpost

There is also a panel presentation every year to educate Members of Congress and their staffs about brain injury issues.

This year, Mac Fedge, and his mom and caregiver, Kathy Fedge, will be speaking on the topic of “Finding a New Normal”.

I have the pleasure of knowing Mac and Kathy and I know they will do a great job of telling it like it is.   I wish I could be there to see them speak!

Many years ago, Mac and I were both members of the Speakers Bureau at Brain Injury Services of Northern Virginia and I was always very impressed with how hard Mac worked at his recovery and I feel lucky to have gotten to watch and be part of supporting some of that progress.  Go Mac!

And the last event of the day is a Reception where there’s another opportunity to talk and get to know lawmakers, participants and the community around brain injury recovery.

Here’s the schedule for Brain Injury Awareness Day on Capitol Hill on Wednesday, March 18, 2015

Representative Bill Pascrell, Jr. (D-N.J.) and Representative Thomas J. Rooney (R-Fla.), Co-Chairs of the Congressional Brain Injury Task Force in association with the Brain Injury Association of America cordially invite you to participate in the 2015 Brain Injury Awareness Day on Capitol Hill.

Brain Injury Awareness Day Schedule of Events
10:00 AM – 2:00 PM
Brain Injury Awareness Fair
Rayburn House Office Building, First Floor Foyer

2:30 PM – 4:00 PM
Briefing: Finding a “New Normal” – Post Injury
Supports and Services that Make a Difference
Cannon House Office Building, Room 121

Bobby Silverstein
Principal, Powers, Pyles, Sutter, & Verville

Mac Fedge
TBI Survivor

Kathy Fedge
TBI Family Caregiver

William Ditto
Chair of the NASHIA Public Policy Committee

Matt Breiding, PhD
Commander, U.S. Public Health Service Commissioned Corps
Traumatic Brain Injury Team Lead

David Williamson, M.D.
Neuropsychiatrist & Medical Director, Inpatient Traumatic Brain Injury Program,
Walter Reed National Military Medical Center

5:00 PM – 7:00 PM
Reception Celebrating Brain Injury Awareness Month
Rayburn House Office Building, Room B-33

2015 Exhibitors


American Association for Hyperbaric Awareness

American College of Radiology Head Injury Institute

American Medical Rehabilitation Providers Association

American Music Therapy Association

American Occupational Therapy Association

American Physical Therapy Association

American Speech-Language-Hearing Association

American Therapeutic Recreation Association

Association of Rehabilitation Nurses

BAE Systems

Black Box Biometrics, Inc.

Bob Woodruff Foundation

Brain Injury Alliance of New Jersey

Brain Injury Association of America

Brain Injury Association of D.C.


BrainScope Company, Inc.

Brain Trauma Foundation

C3 Logix

Centers for Disease Control and Prevention (CDC), National Center for Injury and Prevention


Children’s National Health System

Drexel University College of Medicine and Society for Neuroscience


Federal Emergency Management Agency

Federal Interagency Traumatic Brain Injury Research (FITBIR)

Kessler Foundation

Kessler Institute for Rehabilitation

MedStar National Rehabilitation Hospital

Model Systems Knowledge Translation Center

National Association of State Head Injury Administrators

National Institutes of Health (NIH)/ National Institute for Neurological Disorders and Stroke

(NINDS)/ Eunice Kennedy Shriver National Institute of Child Health and Human Development

National Interscholastic Athletic Administrators Association

National Intrepid Center of Excellence

Neurovive Pharma

Positive Strides

Rehabilitation Specialists

Rusk Rehabilitation at NYU Langone Medical Center

Safe Kids Worldwide

Sport Safety International

Sukyo Mahikari

Triax Technologies, Inc.

U.S. Army Medical Research and Materiel Command, United States Army Medical Materiel

Development Activity 

U.S. Army of the Suregon

United States Brain Injury Alliance

Vista LifeSciences

Veterans Health Administration

Wounded Warrior Project

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