DSPs Using and Supporting Technology Use

Bekah Lanko gazes at a letter board to communicate what’s on her mind.

I use assistive technology daily and teach orientation to new direct support professionals at West Bay, RI. With my lived experience using assistive technology and receiving support from DSPs, I share expectations of how to support people’s communication. I have tried new technologies over the years to make communication easier for me. The training I do makes a big impact on the new DSPs because it comes from someone with lived experience. I express myself using the communication device. Here is the speech that I share with new staff.

My name is Bekah Larko.

We have many different kinds of communicators in the world, and I'm going to give you some advice about communicating with someone who uses equipment. When you interact with others who have different abilities. It's important to be confident in your communication skills. Confidence comes with practice. So, try having as many conversations as possible with people with vulnerabilities.

Let me begin by telling you a little about myself and my own communication story. I have a condition called cerebral palsy (CP). It affects my whole body, and it means I don’t have control of movements, and I have exaggerated reflexes. My body reacts to my emotions so when I'm nervous or excited my muscles have a lot of movement.

Finding My Preferred Tool for Speaking Up

When I was three years old, my parents sent me to Meeting Street School, where I learned to communicate with my eyes. When I look up, it means yes; looking down or to the side means no. I still communicate “yes” and “no” this way. Soon after, I learned to spell words and explored different communication systems. I started with picture boards. I would look at numbers and colors on one board, which corresponded with words on the second board. People would match them up to know what I was saying.

I wanted to communicate more quickly, so I looked for a better system.

I wanted to communicate more quickly, so I looked for a better system. I tried something called a light talker. It was an electronic letterboard connected to a switch mounted to my headrest. I would tap my head to get to the right letter to spell the words I wanted to say. Now I could choose the letters by tapping my head, but it went so slowly, as you can imagine, and I would have to go row by row for letter selection. Because I didn't bring my laptop home from school, my sister invented a way to communicate with me at home by singing the alphabet and patiently waiting for me to stop her. She would ask me if the letter I needed was in the first half of the alphabet or the second, and then she would say the letters out loud. Obviously, each letter I stopped on would start the process again until I had spelled out a word. It was extremely slow and frustrating.

I spent a couple of weeks at Camp Jabberwocky on Martha's Vineyard when I was nine years old. One of my friends at Camp Jabberwocky uses the same board. She showed me the letter board she used to communicate with her eyes. The board was clear plexiglass with the alphabet, letters, and numbers printed on it. When she wanted to talk to someone, that person would simply hold the board up near her face, and she would use her eyes to choose letters, spelling out her thoughts. The person on the opposite side of the board could easily interpret what she was saying. My friends made one for me, and I got excited because I could finally talk to them and get my point across. Although this was the best form of communication I had ever used, I wanted more. Not everyone could spell words, and I often had to repeat myself.

I wanted a computer to communicate more effectively. The next communication tool I tried was something called Easy Keys. It was a program on my laptop connected to a separate unit connected to two switches mounted on my headrest. I would tap my head to each side to make word or letter choices. It was hard on my neck muscles.

I had another evaluation at Tech Access. We decided on the Toby C15 eye gaze computer system. I look at a screen, then point and stare at the letter. Before Toby, it was very difficult to get someone's attention when I needed help. Now I know I can simply use the computer as my voice.

Recommendations for Communicating with Others

Many of the people you will meet are on their own journey to become better communicators. Some communicate differently from you. They may sound different from you or use equipment or sign language. Don’t exclude people because you're unfamiliar with how they communicate. Make an effort and practice. Try to connect and learn. If you don't understand, it's okay to ask again and again until you get it. Remember, it shows respect to others when you do. Make every effort you can to understand and communicate.

Don’t exclude people because you're unfamiliar with how they communicate. Make an effort and practice. Try to connect and learn. If you don't understand, it's okay to ask again and again until you get it. Remember, it shows respect to others when you do. Make every effort you can to understand and communicate.

Communication is easier when people are at eye level. When speaking to a person seated in a wheelchair or scooter, sit, or kneel so you and the person stay at the same level. If that's not possible, stand at a slight distance so they aren’t straining their neck to make eye contact with you. If you usually shake hands when you meet someone, don't be afraid to do so with people of all abilities. You won't insult people by treating them with the respect you usually offer others. If someone doesn't shake hands, you will learn their greeting, which may be eye contact alone.

Remember to treat all people as equals. Talk to people with different abilities in the same way, and with a normal tone of voice, chatting as you would with anyone else. We are all equals. Be patient because it may take the person extra time to communicate, especially those using communication boards or devices. Please take time to listen. Always speak directly to people with different abilities, not their companions or aid. It is really rude to speak about people like they're not there.

Most people are on the journey to develop and use their own voice in the world. You can contribute in a positive way by demonstrating respect for quality and communication. If you have any questions, please ask. Thank you in advance for your patience as I type my responses.

Qualities I Look for In DSPs

Trust is critically important for me to feel comfortable with a DSP. I take time getting to know the new staff. I am careful how I let them into my life. They need to earn my trust. When they handle my technology, I want them to be respectful and careful with it. I teach DSPs to use the clear letter board I use to spell words with my eyes. The staff hold up the board in front of my face and focus on what letter I look at. When they point to the right letter, I look up to tell them it's the right one. Then, when I'm done with the word, I look up twice. Then, I move on to the next word. I encourage the staff when they try.

The Toby C15 has really made a difference for me. It helps me express myself and gives me more autonomy. I am a “free bird.” I love to be independent and do my own thing. My assistive technology supports me to do the things I love, like listening to music by Maggie Rogers and Peter Gabriel. I am an artist who makes and sells the jewelry I designed. I come from a big family and have seven sisters. I have been an aunt several times. I am always doing something with my family. I have the autonomy to come and go as I please. I would like to move from group living to my own place, so my team and I are working on this goal together.

I experience a couple of weather-related barriers with my assistive technology. When it rains, my communication computer that is mounted on my wheelchair has to be covered by a bag, so it stays dry. The sun can cause a glare, making it difficult to use the eye gaze method.

Having assistive technology has given me the freedom to communicate with others. It is a cornerstone to living life the way I want to live and do the things I want to do.

Subscribe to Frontline Initiative