Anne Forrest’s story with Knowbility

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I first heard about the great work that Knowbility does through John Slatin, PhD, Sharron’s former co-author on cognitive disability, who was working at the University of Texas Institute of Technology of Learning.

I am a PhD economist and was working for a think tank in DC on economy/ environment issues. In June 1997, I had a concussion/traumatic brain injury in a car accident. I sought medical care and as I tried to return to work, I wasn’t successful because I couldn’t read, the computer affected my sleep/wake issues, and I couldn’t manage my daily life. I was treated for headaches (but no cognitive therapy) and was told I had a limited window of recovery.

On the advice of a doctor, I turned off electronics and did my best to find my way to rehabilitation which was a slow process.  Most of my doctors were telling me I would have limited time for my brain to get better.

Fast forward 3 1/2 years, I was able to get cognitive rehabilitation at St, David’s Rehab after I moved back to Austin.  St David’s Cognitive therapist, Liz Joiner turned my life around and gave me the building blocks to manage my life.  She got me back on the computer with strategies, and together we looked for a volunteer rehab job in technology, and for someone who could help me find solutions to the sleep/wake issues that I had after the concussion. That’s where John Slatin came in.

John provided tech solutions such as LED vs CRT, tried to see if low-vision screen would help me (I ran screaming from it!), tried to see if learning jaws would help me, and got interested in finding a way to solve the cognitive frontier.  John soon launched my public speaking career by giving me a spot to teach in his class on Cognitive disabilities and the Internet, and on to DC to teach to his class for several years.

After we returned from DC in, I reached out to Sharron and told her the progress I had made in my ongoing recovery.  By that time, I was the first non-military, non-pro-athlete person with a concussion to speak on the Congressional Briefing Panel for Brain Injury Awareness day and had spoken internationally about recovery from concussion.  While I had a lot of cognitive and neuro-optometric recovery, I still had issues with how the computer screen affected my sleep/wake cycle and knew it was a barrier to my increased productivity at home and on the small consulting jobs I was now able to do.

I started looking ways to volunteer for Knowbility given that I was raising a toddler with my husband, while fatigue and cognitive impairments made my day challenging – and I wanted to keep a positive attitude. I wanted technology to empower me rather than set me back, so it was a tough balance.  Sharron encouraged me to enter the OpenAir competition.  At that time, my husband had created a website for me, www.aplasticbrain.com.

Each week, I tried to write about my recovery to give hope to those who suffered from a concussion. I wanted to make my website accessible for people with neuro-optometric issues after concussion, and for other people with brain injury.  Most of the websites were inaccessible to me because they were too busy, formatted poorly, and unable to navigate.

I entered my website into OpenAIR in 2013 and worked with an amazing development team.  Joseph O’Connor was assigned as mentor and he was interested in cognitive disabilities.  Joseph and the design team (Cognizant in India) would translate my ideas overnight since they worked while I slept.  I am proud to tell others about the hard work we did to create a site that is easy to navigate, simple, and has a color scheme that is soothing.  I’m still learning how to write more accessible paragraphs and post pictures and describe them for someone who isn’t sighted, but that’s one of the wonderful things about volunteering with Knowbility, I have learned so much in regards to how others with (and without) diagnosed disabilities experience the world.

Last season I volunteered to share lessons learned at OpenAir and to mentor another non-profit team. I always attend the kick-off ceremony and the finale when I can, because it’s so exciting to watch how each year the contest grows, becomes more international and inspires designers and non-profits alike.  Last year, the increased enthusiasm among participants at the kick-off was palpable.

Each year, I speak about my cognitive impairments at John Slatin AccessU.  It’s an opportunity to give back.  Since I don’t look like I have cognitive impairments, it’s been a blessing to learn increased awareness about myself and learn increased strategies to empower me further.  This year I want to teach about cognitive reserve and brain processing, so I’m already looking ahead to work with Knowbility on that for May 2017.

It feels good to be part of an organization that has solutions.  We now know that 90 % of people who don’t get better from concussion have neuro-optometric/vestibular issues like mine — solving the issues of cognitive design for people with concussion is paramount to help them return to health and back to work.  Thanks to Knowbility, I’ve been part of the solution through modeling and teaching about what’s worked for me.  I can spread the word and I am able to help others get the help they need.

 

Anne Forrest, PhD
Speaker, Advocate, Blogger @ www.aplasticbrain.com
Chair, Brain Injury Association of America’s Advisory Council
Research Contributor

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