July 27 -Traveling with a hidden disability (aphasia)

I don’t travel often and don’t travel much without my husband. But in the first 6 months of my ”stroke journey”, I traveled alone three times. Once in an Uber; on an Amtrak train; on a commercial plane.

I had the stroke on May 12, 2019. At that time, my mother and father had just come back from FL where they had been living. They moved home to RI because my mother was diagnosed with lung cancer which had metastasized. We were hoping that she would be ok for the summer so we could have some last fun times. The most important thing for my mother was family. Well, shortly after they came back to RI, my mother entered hospice. I didn’t get the chance to see my parents before my surgery/stroke. After the stroke, I desperately wanted to see my mother as much as possible. I couldn’t drive yet. My husband was going through radiation every day, my husband had to work as well, but he took me as much as he could.

At the end of her life, my mother was in the hospital. One day, I couldn‘t get a ride with my husband and I desperately needed to go the hospital. Somehow I got my husband to agree that I could take an Uber. At the time I could not say much. I couldn’t even say my name. I couldn’t speak complete sentences.

But I was ready. So ready. I had the drive. The motivation. I had the note that the speech therapist made for me. My husband “let” me go. He made sure to book the Uber, called my sister and made her promise to meet me downstairs at the front door to the hospital. My husband met the driver, told him my name and told him that I couldn’t talk. It was a very quiet, safe drive. I arrived at the hospital, went upstairs and saw my mother. I went up alone; I didn’t text my sister. I didn’t want to be coddled anymore that day. I couldn’t speak well, but I knew I could make it to the room on my own.

I really wanted to be ”normal” and as independent as I could. By September I went back to work very part time. I also wanted to help my children who both helped me tremendously when I had the stroke. Both children indicated that they needed some help with their dogs. My daughter was going to a wedding and needed someone to be there for her dog. My daughter in law was going to a conference and my son said he could use some help with their new puppy while he worked.

So I bought my train ticket and traveled to Richmond, VA to watch my daughter’s dog. As it turned out, their friends also needed their two dogs watched too. So I committed to watching 3 dogs for one night.

I called Amtrak just before the trip and talked to a very patient representative. He told me that I didn’t need to purchase a seat for disable individuals if I didn’t need physical assistance. What I could do, and did, was give him my reservation number and he put a note on that in case of emergency I would need assistance.

On the morning I was leaving, I was more than ready. I had my small luggage, my iPad, cell phone, earphones and lots of good snacks. I also had my index card explaining that I have aphasia. The 11 hour trip itself was pretty uneventful. I had a bit of trouble getting my bag off the train in Richmond as there is a gap between the train and the platform. A nice conductor came to my rescue.

With the train experience under my belt, I was ready for a more challenging trip - the plane trip to Nashville, TN to help my son with the new puppy.

This trip turned out to be even more challenging than I let on to my husband and son. I obviously made it ok, but there were many things that confused me. In an airport there are more distractions, more directions both verbal and written. At that time in my life, I didn’t want to admit that I had deficits although it was obvious that I did. (Sometime later my neurologist suggested that for trips I should have someone accompany me. I now have a different opinion. I think I should take advantage of any ADA assistance which would be helpful to me. But I digress.)

I was flying out of Boston with JetBlue because it had a direct flight to Nashville. It just so happened that there was a huge windstorm the night before. We didn’t take into account that the roads would have depris and travel would be slower than usual. I made it to the airport with less than an hour (it could have been even less. I can’t really recall.)

Once I got into the TSA line, I only needed to show my ticket to the agent with the flight number and time, and they made sure I got through the first part of the line quickly. Things got complicated when a TSA agent was directing us to get into other lanes and giving quick directions that I couldn’t comprehend quickly. A fellow passenger helped guide me to the correct lane.

I got past baggage check and made it to what I thought was the correct gate. It took me a while to realize I was I was in the wrong place and had to get the right spot. I had my printed ticket to show airport staff and I was directed to the correct gate. Unfortunately, the confusion didn’t end there. The correct gate was located behind a service desk that I didn’t see right away. I had to show my ticket yet again at the desk and had to try to follow their directions behind the partition. Finally made it to the right place and was able to immediately board the plane. The flight itself was smooth. Thank goodness . I could relax a little bit.

I was always scared and anxious when traveling by plane. Somehow after the stroke I was not at all frightened or anxious and I had a really nice time.

What I’ve learned about traveling since these events:

Amtrak - While most of the information is on passengers who require physical assistance, requests from passengers needing other accommodations as I did, assistance in case of emergency, can be made to ensure the safety of passengers on Amtrak.

https://www.amtrak.com/accessible-travel-services

Transportation Security Administration for Air Transportation - I didn't request any accommodations when I flew. I know now that I could have/should have requested some help or even just used their TSA identification card.

https://www.tsa.gov/travel/special-procedures?field_disability_type_value=11%20

https://www.tsa.gov/sites/default/files/disability_notification_card_508.pdf

Alzheimer’s, Dementia, Aphasia, Brain Injury

Inform the TSA officer

Inform the TSA officer if you or your traveling companion have Alzheimer’s disease, dementia, aphasia, or brain injury and require assistance with the screening process. You may provide a TSA notification card or other medical documentation to inform the TSA officer.

Screening

TSA officers can screen travelers with Alzheimer’s disease, dementia, aphasia or traumatic brain injuries without separating them from their traveling companions. You and/or your companion can inform the TSA officer about the best way to approach and conduct the screening, especially if it is necessary to touch the passenger during the screening. If your companion provides assistance during screening, he/she will need to be rescreened. You or your traveling companion may ask to be screened in a private screening area.

The UK is more disability forward for hidden disabilities. They have something called Sunflower program. I believe that other countries also participate. There, the sunflower is symbol of a hidden disability.

Here in the US, 3 airports have adopted the sunflower project. Anyone with a hidden disability can ask to wear a sunflower lanyard. There is an optional card to complete to disclose personal information if the person wants. Staff members who see someone wearing the sunflower are trained to approach the person, ask them if they assistance, and wait for an answer.

The sunflower project is being adopted by an airport in Minnesota.

https://www.mspairport.com/airport/accessibility/hidden-disabilities-sunflower-program

I wish that more places would have the sunflower project. I would definitely think about taking advantage of the benefits.

travel tips for people with aphasia and other types of communication disorders:

1. know your rights

2. research what accommodations are available to you that might help

3. take noise cancelling earplugs or headphones

4. take Aphasia card

5. if traveling by plane, request TSA pre-check

If you didn't get the chance to read yesterday's blog and have questions about hidden/invisible disabilities: https://www.youtube.com/watch?v=qWPqg3PJ0D4

I hope you learned as much as I have today. I'm so glad I had the opportunity to go on these trips by myself. In the future I may make different choices, but I'll still want to be as independent as I can.

until next time.....