Summer Institute II

I’ve been listening to the tapes I made of the 2014 Summer Institute on Theology and Disability back in June. It is almost impossible for me to take notes and listen to a lecture or presentation at the same time due to my brain’s inability to divide its attention which is why I tape them. It takes quite a bit of time going back through the tapes to take notes since I have to pause the tape in order to do this. I can’t imagine going to school now for it would take me forever to earn a degree!

Attendees who were Presbyterian or from another Reformed body.

Attendees who were Presbyterian or from other Reformed bodies.

I so enjoyed being around others involved in the disability community for we speak the same language. The Institute values the experiences and opinions of people living with a disability which isn’t the case back in the “real world.” After every speaker, there was a time for questions. There are the usual academic questions which one gets in a seminary classroom, sometimes asked by people who have disabilities and are serving as ministers in a faith community.

However, what I really liked about this time, were the questions from folks who have difficulty speaking due to their disability. They often spoke slowly and with great care. One of the challenges I have due to my TBI, is concentration. Some of the neurons in my brain were destroyed in the accident so the remaining ones, must do double duty. As a result, concentrating on something for an extended period of time, wears me out.

Here the issue of different challenges for folks who have different disabilities, clashed. I need someone to speak clearly so it doesn’t take a lot of concentration for me to understand them. Someone who has a disability which impairs their speech must speak slowly which I imagine is hard to do. However, it takes real concentration for me which causes cognitive overload. In our regular lives, people are too busy to take the time to listen and understand so I appreciated that time was allowed for this despite my cognitive overload.

What I really liked about the Institute is, everyone knew there are differences in disabilities. My challenges are different from someone else’s and the important thing is to take the time to really listen and understand one another. This is something those of us who have disabilities can teach the rest of the world, if they would only pay attention to us.

Summer Institute On Theology and Disability

I must admit, I was a bit nervous about going to the Summer Institute on Theology and Disability in Dallas June 16-20. Traveling is difficult for me due to all the stimulation and cognitive overload and I don’t do well in new environments. I need to be familiar with them because too much cognitive work, overloads my brain.

earplugsHowever, I was prepared. I brought a bottle of Sandalwood that I could inhale periodically. It’s a relaxing scent and it calms me down. I also brought my earplugs. Michael loaded some meditations and music on my phone so I could listen to them. All of this helped me so much and I didn’t have a repeat of last year’s escapade.

Last year, it was in Toronto and I went by myself. I’d never been out of the country before (accept when I was little and went to Mexico) so dealing with passports and such was very hard for me. Plus the Toronto airport is difficult to maneuver and having spatial orientation issues didn’t help. I know my limits and am very good at finding a quiet place where I can put in my earplugs and “rest my brain.”

However, last summer, I pushed beyond my brain’s capacities and began acting a bit strange. At one point I got so tired, I simply laid down under a table in the middle of a meeting so I could sleep. It is hard to explain, but there comes a point when my brain just shuts off which is what happened to me. To make matters worse, I couldn’t sleep at night so sometimes I simply roamed the halls in the dormitory where we stayed.

I was convinced Michael had died so I called him at work. When I got him, I was sure he was in the hospital lying to me so he put his boss on the phone. I was so “out-of-it” I figured his boss wasn’t telling me the truth either. There was a United Church of Christ (UCC) meeting going on at the same time and I was sure I saw Mark Ramsey, the pastor at Grace Covenant Presbyterian Church, there because he once served a church dually aligned with the Presbyterians and the UCC’s.

I even called the director at 2 AM and met him out in the hallway just to talk. Of course we were sitting on the floor but at one point, I decided I was tired and needed to lay down using the director’s lap as a pillow!  To make a long story short, he had no choice but to hospitalize me even though he was aware of what was going on. Of course the hospital had no idea so they ran all sorts of test. They called Michael to come get me but no one told him very much so he had no idea what to expect.

Sleep is what works for me so I slept in the hospital for hours. When I started to become more present, I realized I was stuck in the hospital until Michael came to get me. It turned out, Michael was so stressed that when he got to Toronto, he went to the Quaker meeting. He figured he couldn’t get me for 48 hours any way so he turned his phone off. Not being able to get ahold of him, I started to get nervous and called a few folks I knew in Asheville to no avail. All I could do was wait for him to come, which he finally did.

So this year, Michael came as my “attendant.” I asked him to attend to my needs by bringing me breakfast in bed one morning, but he refused. I’ll write about the Institute in later posts because I have much on which to reflect. One of the things I want to write about is the terminology for those of us who need a little help. While “attendant” is better than “care giver” I prefer “care partner” even though I understand the difficulties in using this term.

In case you’re interested, here is a link to an article that ran in a Methodist publication. If you look carefully, you can see me in red on the far side of the room. http://www.umc.org/news-and-media/theology-and-disability-summit-gets-united-methodist-welcome