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April Update

  It's been awhile since I've posted.  Justin's situation is hard to write about, but I know there are people who want to know what's going on with Justin, my son.  In truth, he is getting sicker and weaker.  For awhile,he made great progress, talking, eating, and getting back into his power wheelchair.   Then he started getting weaker.  His left lung became covered with secretions, and he needed surgery to scrape things out. Then a CT scan revealed more new spine fractures (total of 7).  After that, he just hasn't been able to get over the hump.  This week, Justin decided to discontinue the weaning from the ventilator.  He is on full breath support and can no longer use the voice valve to talk without dangerous oxygen drops.  Pain medication has been significantly increased to help him deal with the pain. It's a tough thing for a 23-year-old to confront one's mortality.  We will continue this journey with Justin to the end to the best of our abilities.  We

Walking in Memphis


May 25-28

To celebrate Justin’s high school graduation, we are on a wheelchair van road trip with the first stop in Memphis.

Traveling with Justin can be a lot of fun but sometimes also very frustrating. We had trouble finding accessible accommodations in every city stop on this trip.
Julia booked us at the Hilton. When we arrived, we discovered that all of the handicapped rooms were in the basement/parking level.

Our room was accessible for perhaps an older person who could walk but needed a rail support for the toilet or bath. However, we had asked for a wheelchair accessible bathroom with roll in shower. The bathtub, narrow door and tight spaces didn’t work.

An hour later. We were settled into a room that worked. It was located in the very back of the basement floor next to the staff break room door. But it worked.
The pool had a lift for disabled people but could only be reached by negotiating a flight of stairs. We asked how a power wheelchair user could access the pool. Each employee we asked looked at us like we were aliens. No one knew.

This is often business as usual for wheelchair consumers in our country. Things are better with the ADA (Americans with Disability Act). But we have a long ways to go with regard to access and respect. It isn’t as though our room was cheaper.

Think for a moment how races or genders would feel about being segregated in hotel basements or restaurant side rooms. Or ushered into the back room or freight elevator representing the handicapped entrance.

We were pretty tired when we finally got settled into our room and got unpacked. Still, we had time for some Memphis barbecue.





On Saturday, Julia and Justin toured the Civil Rights Museum while I took a long stroll to downtown, Beale Street, and the riverfront. I ended up drinking a 201 Poplar IPA at Earnestine’s and Hazel’s.





We met up for an afternoon stroll around downtown, stopping for gyros, and listening to music at a riverfront festival. On Saturday night, we dined on delicious fried catfish at the Soulfish Kitchen, along with sides of fried okra and collard greens.

On Sunday, we returned downtown and toured Old Dominick Distillery. Our guide did a great job, and the location provided excellent accessibility for Justin who enjoyed it all including fresh squeezed lemonade at the end of the tour. Julia and I sampled some of the distilled stuff.









Sunday evening, we ate burgers at Huey’s and listened to live music. Although it was crowded, staff did a great job of finding us a table and creating a path to get there. Food, service, and music were awesome!
Next–Nashville.

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