In Massachusetts, blind woman dedicates life to educating others about blindness

From the Arlington Advocate:

ARLINGTON, Mass. — Lillian Johnson (pictured) lost her vision completely when she was 18 years old. She attended the Perkins School for the Blind in Watertown as a child, hoping to one day become a physical education teacher. When she realized that her impaired vision would not allow her to do that, she went to school for medical office training. Throughout her life, Johnson has tried to make strangers she meets — from Starbucks baristas to Bank of America clerks — feel more comfortable when they interact with a blind person.

In 1988, Johnson decided to switch from using a cane to using a guide dog. The switch also ignited her desire to bring more awareness to the school that her dog, Lucy, came from, the Fidelco Guide Dog Foundation in Bloomfield, Conn., where Johnson is also a board director.

Johnson offers presentations and trainings to businesses, schools or any interested organization that want to learn more about blindness and how they can be more accommodating to those with disabilities. She currently is part of a project that trains Tufts medical students. Her website, lillianj.org, includes contact information and references for anyone interested.

Q When did you start giving these presentations?
A A long time ago. Basically, I’ve been to schools all over the map and I have one coming up on November 30 with the Girl Scouts. That’ll be fun. I just keep my eyes and ears open. [Disability awareness] is important even for businesses, even here in Arlington. I have had experience going into stores and banks and the clerks don’t have a clue! One day I went into Starbucks and I ordered a muffin to go. The poor clerk didn’t even give it to me in a bag, she was fumbling around and dropping change everywhere. She was so terrified of the dog and I didn’t want to embarrass her. So when I got home, I called the Starbucks corporate office and told them what happened. It’s embarrassing not only for me, but also for the clerk, and I think they should have better customer service training. They said yes, they would look into the matter. Then one day I was at Bank of America, and I was told to stand over at a [teller’s] window, so I did. I waited five minutes, then 10, until someone told me it was closed. They said, ‘Can’t you see that it’s closed?’ Well, no. It’s a constant need.

Q Tell me about your work with Tufts medical students.

A I, along with other folks with disabilities, work with third- and fourth-year students at Tufts. We all go into waiting rooms and say we have shoulder pain. We have a whole gamut of different disabilities, so we thought shoulder pain would be good, because we all use crutches or wheelchairs and I use my dog, so we thought that would be a good general problem. When they knock on the door to come into the exam room, they have no clue what’s on the other side. Chris Walker is the pretend name that we all use. In the room is a faculty person and observing medical student. The student who’s being evaluated says, ‘What brings you in today?’ I say, ‘Shoulder pain and I refuse to go to my previous doctor.’ Then I have to hope they ask why that is. If they do, I say, ‘I feel that I didn’t want to go back because she was uncomfortable with my disability.’ And with my guide dog sitting right next to me, they always say, ‘Oh, what is your disability?’

At the end, I ask how they think it went. They’re nervous, because they’re being observed, so after the faculty person and other observing med student make their comments, it comes back to me. I say, ‘We have a little time left over and this gives you the perfect opportunity to ask me any questions you may have regarding blindness.’ It gives them a chance to ask whatever they want. When they see a patient with a disability, they need to focus on the issue that person came to the hospital for, which isn’t necessarily about the disability. I tell them they should say, ‘I really don’t know much about your disability, would you like to tell me a little bit about it?’

Q What do you tell people who want to pet your guide dog?
A Some people will reach out and try to pet the dog, but the dog has a harness on and it’s my eyes, so I want him focused on me. It’s important to ask the handler if you want to pet the dog. Some are good, and others say no. With me, at presentations, they all want to pet her and I say, ‘If your teacher allows you to, yes, you are able to come up and tell Lucy hello.’

Q How long have you had Lucy?
A She’s about four, and the dogs are all usually two years old when you get them. At Fidelco, they breed and train and raise the dogs who are sent from Germany. Shepherds here in the states are too closely bred, and that creates hip displature. They really herd the animals and they just love to work. Lucy is my fourth and I’ve had all females, but a lot of times the males are just as good. I received my first dog in 1988 when the school was smaller.

Q So you haven’t always had a guide dog?
A I always wanted to guide dog but always wondered, can I trust a guide dog? There are only 12 or 14 guide dog schools in the U.S. and only two where trainer and dog come to you, which is called in-community training. I applied, did an interview, and had to get references … I didn’t receive Portia, my first dog, until march of ’88. I was just so looking forward to it. When I got the call, I was just so ecstatic. The day she was supposed to come I wondered, am I doing the right thing? It’s like adopting a child. But then the bonding starts and the bonding between myself and all of my dogs has just been incredible. When I started working with trainer, we would start locally in neighborhood. He told me he wanted me to just take Portia and go around the block. So we went and I was nervous but when I said ‘Find home,’ she turned right into the driveway. I was crying, I got down on the ground and hugged her.

Q What’s the biggest challenge people usually come across with guide dogs?
A Building trust. How can I trust a dog? You definitely can. They know to stop at flights of stairs going both up and down. You may know your own area, but if you’re somewhere you’re not familiar with you say, ‘Find the stairs,’ and he or she will take you to the stairs and stop. It’s building up that trust, which in my case, was no problem. There are some blind people who prefer the cane and that’s fine and I admire them.