BIST had two speakers come to our May community meeting: BIST member and writer Shireen Jeejeebhoy discussed her experiences trying to re-gain her love of reading and Katie Muirhead, advocacy specialist at the Ontario Brain Injury Association (OBIA), spoke about advocacy.
Before her brain injury, Shireen was a vivacious reader, a person who could lose herself in a book for hours. But after her ABI, Shireen lost that ability completely. It’s how she learnt the hard way that literacy does not equal reading.
Shireen can read words and sentences but can’t remember the information from them. She often stops in the middle of a sentence, and is unable to retain new vocabulary. She said she usually needs a nap after a reading session, and ABI-related initiation problems mean even choosing what to read is a problem.
After her brain injury, Shireen said she followed the medical model of re-learning how to read. She focused on one page at a time, and says it her a full year to read a simple book, which, she says, she remembers absolutely nothing about.
The interesting thing is, Shireen has written several books since acquiring her brain injury, because, as she explains, reading is taking stuff in, whereas writing is taking stuff out.
Shireen said her first illumination was learning the physiological reasons why she was having difficulty reading from a EEG test. Also, biofeedback treatments helped her remember characters and improve her concentration, though she was still unable to recall the book after she was done reading it. When her biofeedback treatment ended, Shireen could read for 20 minutes a day – what the average person reads. But Shireen is a writer who needs to read for hours and hours a day. 20 minutes isn’t good enough.
Which is why Shireen says she convinced her neuropsychiatrist to help her regain her love of reading. She says she didn’t want to go back to a reading “expert”, who would claim her reading abilities are fine. She needed someone to start from the ground up, and who would respect her goals.
While the road Shireen is taking is bumpy, her neuropsychologist’s treatment is helping. His first exercise was to take a newspaper article and to listen to Shireen read out loud in the same way she would read silently, for as long as she could. Shireen says this helped her doctor see her get a headache, repeat words and get tired from her efforts. From this he is able to work with her to help her, hopefully, regain her love of reading.
You can read what Shireen has written for our blog about her experiences here.
Brain Injury and Advocacy
Katie Muirhead is the advocacy specialist at OBIA, and survivors who need help accessing services or benefits they feel they are entitled to can contact her for assistance at: firstname.lastname@example.org or (905) 641-8877 ext. 229.
Katie explained that advocacy is different than lobbying. Advocacy is supporting a cause, and trying to get others to notice and pay attention to that cause. Lobbying goes a step further, and aims to make systemic changes – something which non-profits such as OBIA (and BIST) are unable to do.
There are four types of advocacy:
- Self advocacy – advocating for your own interests
- Peer advocacy – advocating for someone else’s interests
- Systemic advocacy – advocacting for change for a larger group of people
- Legal Advocacy – when a lawyer helps advocate for your legal rights
Focusing on self advocacy, Katie discussed that we all have some barriers to being good self- advocates. Maybe we get frustrated quickly and can lose our temper, or keeping track of paper work just isn’t our thing. What’s important, Katie said, is to recognize those weaknesses and get support in dealing with them.
In order to achieve your goal (for example, get on ODSP benefits) Katie said it’s important to break down the problem into more manageable pieces. For example, if you were denied ODSP, consider:
- why you were denied
- what are the facts about your case which you know are true
- collect the right information (usually, additional medical information)
- carefully look at the denial letter
Documentation is very important. Be sure to keep track of all conversations that you have about your case. Include the following in your notes:
- the date
- names of people contacted and their titles
- agency name and telephone number
- description of what was discussed
In addition, it is very important to keep track of your medical information. Katie suggests keeping a binder of all of your documentation – so that everything is in one place. Organize these documents in a way that you can easily retrieve them.
Finally, advacating for yourself is a very stressful thing to do. Often you are advocating because you have denied something you need, such as financial benefits. It’s why Katie said self-care is so important. Things such as setting boundaries (I will not take calls or work on this issue during meal times, for example), talking it out with people you trust and trying to take time out from the case are very important. For more information, you can read Katie’s presentation here.