July 28 - Accommodations

When I was in the hospital after the stroke, I could not communicate my needs and I was not given any aids or services that would have helped me. It’s no wonder why I was not provided any supports; the neurologist told my doctor that I was “out of it” and the Speech Language therapist only came once to do the assessment. When my husband or sister were there, staff would talk to them and rarely to me. It was aggravating, but what could I have done then? Nothing.

Since I’ve gotten my voice back, I have been determined to do whatever I can on my own to communicate my needs. It was actually part of my therapy to start going places and interact (communicate ) with the community. My first activity was to go to the local supermarket and ask for sauerkraut. It took me several trips to even get the courage to try.

Face to face communication is easier for me because I can use body language, writing and facial expressions and I can also tell if the person is understanding me. I have a pen and notebook with me all the time now. Before I would take a whiteboard and marker, especially to the doctor's office.

Phone calls are still challenging for me even now. Simple requests, such as making appointments, I have been doing for a while. If the conversation becomes more complicated, I will let the listener know that I had a stroke and I now have aphasia. I tell them I may make mistakes and if they don't understand me, I'll repeat it. I also ask them to repeat directions or dates or numbers, so I can write them down.

Sometimes though, I will still ask my husband or someone else to be there with me or call for me. This is especially true if I think that the information is going to be hard to understand or complicated.

In education we often talked about accommodations. In ADA language they talk about aids and services to help disabled people get the goods, services and information they need. Aids for communication include: a qualified speech to speech transliterator in court or other situation where the person has to speak for a long time, use of communication boards and taking the time needed to communicate with them, paper and pencils. And of course staff should be trained to listen attentively to customers and not be afraid to ask if the customer needs additional help. Under the ADA the client or person with the disability has to be the one to agree to any aids or additional services that the the company/business would like to provide.

https://www.ada.gov/effective-comm.htm

Even with the regulations and training, there can be confusion and the person who needs assistance can feel that they are not being served well.

I have a few experiences where I feel that I was not served well by a business or with the business' practice.

Hospital

Of course, the first one is about my experience at the hospital after the stroke. I have talked about this at length and don't want to bother you again with it.

Shopping

A while ago, I was at the local grocery store. A store where I go frequently. (once a week usually). I buy fresh fish quite often and the clerks who are usually there know me now. I usually ask for 3/4 of a pound of any fish I'm buying. (note: 3/4 is a very difficult word combination for me; somedays I get it right, most times I don't).

On this particular day, they were running a special Wednesday sale and the store was busy.

They put three staff members behind the counter (one of which looked like a manager). Customers gathered in front of the counter. The staff were taking orders quickly and wanted toserve the next customer. When it was my turn I was still a ways back and I would have to YELL my order. The staff member who was requesting the next order, my order, was saying "Next", "Who's next" and getting annoyed that no one was calling out their order. Well, I can't call out my order. Even if the situation wasn't high XXX, I could not raise my voice. Since the stroke I always talk softer and have a hard time with volume.

Well I finally made my way up to the counter and placed my order. I was so annoyed that they did this. I'm really not one to complain. But when I got home, I carefully crafted a well worded email. Praising the store for what they usually offer. letting them know that the usual staff in the fish department offer excellent service. But relaying my experience on that morning. They got back to me quickly but the answer wasn't what I expected.

I wish I had kept the email chain to show you. Now that I know more about the ADA, I could have pushed them to perhaps change their policy to be fair. Perhaps installing a ticket system which they have for the deli department anyway. The representative suggested that I try to avoid shopping at busy times when they use this system.

Banking

I seem to have left my new credit card at home when we made the trip here on Sunday. I noticed it on Monday when I went to buy groceries. My husband was unavailable. My normal instinct would be to wait for him to make this type of call, but I wanted to get it straightened out right away. What I basically wanted to find out if the card was used since Saturday and if not, could I put a hold on it instead of cancelling and getting a new card.

My credit card/insurance company has changed their phone menu. Instead of the option to say or enter a number for a task (a department or need), the menu asks "describe what you want". There is no text option only voice related. A person, like me, is at a major disadvantage. After the system not understanding what I wanted "credit card" (I got a message if I speak a language other than English, these are the languages that are accepted.)

It finally knew that I wanted credit card services and began to ask me additional questions. Finally I was able to say "representative!" and was transferred to a representative. It was frustrating to say the least.

Summary

I believe that there is more work to be done in giving people with communication challenges better service and accommodations if asked for. These are just a few examples of where confusion and frustration is had trying to access what we need and. want from businesses.

I believe it is important for those of us who can explain ourselves somewhat to educate the public about aphasia and other communication disorders, to tell our stories, and advocate for better services when we can.

Being part of the solution:

1. being proactive and letting businesses know that you need assistance and what would be helpful

2. having assistive technology on your phone and know how to use it

3. carrying a Boogie board or pen/paper to write or draw

4. research what you want online and practice (restaurants, coffee shops, etc.)

5. participating in research/studies *

*I often learn about research project or studies that people with aphasia and other communication disorders can participate in. I volunteered for a study that Google is doing to improve the Google assistant and create other assistive technology. I now have access to Project Relate, a voice recognition and synthesis app being tested by Google. It will make it easier for users to be understood. The listen function turns the user's speech into text. Repeat function says what the user said in a clearer voice. There is also an Assistant function which will connect to google assistant for common tasks.

some resources

TTY on cell phone:

https://blog.prepscholar.com/what-is-tty-mode-on-a-cell-phone

This is language from ADA website https://www.ada.gov/regs2010/smallbusiness/smallbusprimer2010.htm

information for small business

effective communication: guidance from the US department of Justice, disability rights section

https://www.ada.gov/effective-comm.htm