The DeafBlind Community
Deafblindness is the condition of little or no useful hearing nad little to no useful sight. Different degrees of vision loss and auditory loss occur within each individual, thus making the deafblind community unique with many types of deafblindness involved.
World Federation of the DeafBlind Global Report 2018 – https://wfdb.eu/wfdb-report-2018/
Interviews
Hello, my name is Jaimi Lard and my sign name looks like this (‘i’ handshape around the face in a circle). I went to Perkins School for the Blind in Watertown when I was five years old. I had amazing teachers. We had a small classroom. My teacher and I worked one-on-one together to learn math, science, reading, and history. My favorite was science class. My favorite teacher was skilled with sign language and used tactile signing to make things clear to me. A lot of times, when I would read books, the teacher would explain the content to me in depth. To write, I used black marker. My teacher taught me to write the alphabet that way. Then, reading it became slowly more and more clear. I also went to gym class; Perkins had a pool, so I learned how to swim there together with the teachers.
I also enjoy crafts class, and also after school was finished I would walk to the dorm. The staff taught me how to become independent: how to get dressed, how to shower, how to eat the right way, communication skills, playing skills, socializing skills.
I remember playing outside with friends on the swings. It was fun to play outside. Later, I went to cooking classes with three or four students and teachers. The teachers were amazing at describing to me how to cook in a way that was easy for me. I remember making chocolate chip cookies, that was a fun class. Perkins School is amazing!
Also, I went to the VOC program for work experience. I did a lot of different work and learned how to search for work and interview with bosses and teachers. I remember I worked at Perkins School making braille machines in a factory at Howe Press. Perkins School was a very famous school for that. Learning how to work machines was boring, I mostly just moved things and pulled levers and then moved them again, all day long. But it was practice for a lot of skills.
I also worked somewhere else a long time ago, at a restaurant called Papa Gino’s. I made salads and added cheese over the top and learned how to clean my work station. I learned how to communicate with the staff by writing notes with large black letters. There weren’t computers back then so we used paper; the workers and I would take turns. It was fun working together!
I also worked at a greenhouse with plants, and that was fun, too. I enjoyed the training. I also worked at a summer camp for a few years, I think I was seventeen when I worked there in the kitchen. I made drinks and a bunch of different desserts. I wasn’t a cook, I was the assistant cook in the kitchen and worked together with the other staff.
Then, I worked at Brigham and Women’s Hospital for thirteen years. With Perkins School, I met the boss and other workers. In training, I learned how to go to the different floors bringing mail and X-rays and samples to the lab. I took the elevator with a big cart. They gave me notes so I would know where to go in the elevator, then I would go upstairs and get the samples and bring them to the lab, and then I would go back down the elevator. I was a messenger for the Transport Department, which is the same idea
as a delivery person. I did that for thirteen years and really enjoyed it. Working at the hospital was an amazing experience. I taught some of the staff a few signs so we could communicate.
Later, I left for Perkins School to become a spokesperson. I went to a bunch of different schools and colleges and spoke about my life experiences as a DeafBlind person. I met the children, I loved the children there. I taught them some fingerspelling and signing. The kids were so excited, they wanted to learn more and more and more! I told the children about how I read and communicate with people, and about how I can live independently at home. People were fascinated when I showed them my PowerPoint with videos of my apartment experience. People enjoyed that, they thought it was cool.
Hello everyone! I would like to talk about my independent living. I want to first describe how I lived independently when I was a student at Perkins School for the Blind. Perkins School has a special program for independent living training. I went to that program and learned how to become independent. I lived with three roommates, and we all shared responsibilities. The training taught me how to clean and how to cook a variety of things. I was a good learner, and when I graduated from Perkins, I didn’t live independently yet, but last year I finally moved to a new apartment and now I live alone with no roommates. I decided to live alone for a few reasons. No male roommates, not that I really mind either way. I can spend time with friends or I can go places to socialize.
How do I live independently? Well, first, I have a computer and an iPad, and my phone for communication. For example if I want to go out food shopping, I rely on DeafBlind community access technology through the internet. They have agency support through MCB and MCDHH. They have funding in support of DeafBlind services, which require providers to meet with a DeafBlind person; they are already trained to help with independent living. For example, a person in training to become a provider goes with me to the food store to help me shop. They go with me to dentist appointments, and there’s also an interpreter there who will help with necessary communication with the doctor. The interpreter and the doctor keep confidential information private and they translate between speech and sign. That’s how an interpreter works. After, the provider drops me off at my home.
If there’s no provider for food shopping, I am stuck, so I have to go online for food shopping to places nearby that have online options. I have a special app I can open to search for specific things by looking at the pictures. I set it up so the food is delivered through a service that will bring the food to my home. The only negative part is I have to pay for the tip and the delivery service fee, which are kind of expensive. Or, for example, I forgot my milk last week. I had to set up an appointment ahead of time for food shopping, but when I brought it inside and put it all away, I realized I’d forgotten the milk! I think that was last Monday. I placed another order and I was finally able to have milk, that was great.
The iPad has helped me become more independent. Last Monday night I was chatting with my mom using FaceTime which means the video will connect through the internet and my mom will sign or fingerspell through the screen—it’s really cool, very good technology. I can communicate with my mom and Jaimi that way.
Sometimes I use the computer for emails and business communication related to scheduling with providers and making appointments, like dentist appointments. It’s easy for me to communicate important business things through email.
Another piece of technology I use in my independent living apartment is a bed vibrator. If there’s a fire or an alarm clock or my phone gets a text message, it will vibrate the bed so I wake up, and there’s also a light that flashes. If someone rings my doorbell—since if someone knocks I can’t hear—they use the doorbell and the lights flash and that’s
how I know someone is there. If a provider is going to show up at my apartment, they let me know fifteen minutes before and even contact me the day before to let me know all the plans and make sure I understand everything.
I also have amazing independent living technology. I use the microwave and I am learning how to cook. There is braille for turning heat on high or turning it low. The oven has braille for changing the temperature. I haven’t learned it yet, but I’m working on it! There’s braille on the dials with arrows.
My apartment was made accessible for the former tenants who lived there before me, who were old and sadly died. So I moved into the apartment and I can live there independently on my own. Okay, my time has run out, I’m finished
My name is Winnie Tunison. My husband was Deaf, he passed away nine years ago. Now, I miss him. He was an amazing support when I was going through difficult times because of my vision. My parents are hearing. My mother was eager to learn to sign; she knew I would become blind eventually, but I didn’t know.
I went to the New Jersey School for the Deaf. The nurse checked my eyes and informed my mother that I needed to see a professional doctor for retinitis pigmentosa. I couldn’t stand that doctor, so I went to see a different one. This new doctor looked at my eyes and told me not to blink. The exam made my eyes feel like they were burning! Other DeafBlind people told me they went through a similar experience. That was a terrible time.
The doctor told my mother that I would become blind when I was twelve years old, but he was wrong. The doctor told her about Usher Syndrome, when you are born deaf and become blind. I am type 1. Deaf and blind. Type 2 is hard of hearing and blind. Type 3 is you are hearing and sighted, but become deaf.
I have a sister, her name is Cheryl. She is now blind, DeafBlind. Our mother didn’t know she had vision problems until she was 30 years old. She has Usher Syndrome, too. She can drive, but I can’t drive because I have advanced poor vision. When she was working at a phone company, she got into a car accident and decided to stop driving after that, which changed her life.
My husband and I were married for 46 years before he died from Alzheimer’s. I have two daughters, they are both hearing and they are now both certified interpreters. Both live in Rhode Island. I am so proud of both of them. My relatives live all over, and they don’t communicate with me by signing. My mother asked her siblings to please learn some signs or fingerspelling so they could communicate with their niece, but they said no. My mother ended up having to interpret for us all the time, which was sad.
I went to a Deaf school and graduated in 1966, then got married, and then my vision loss began. I didn’t know it until my second daughter was two years old. Someone told me I would become blind. I didn’t want to show the hurt I felt from that. My husband came home from work and told me I would become blind. He said, “Alright,” and he supported me. He told me to think of our daughters, who were so little still. I was okay from then on until I became blind when I was about 40. I did go to the Philadelphia Association for the Blind to learn braille, and before that, a hearing teacher came to my home but they were not a skilled signer—very slow. I took time off work and tried to understand the rules of braille, but there are a lot of different rules which confused me so I gave up.
One Deaf woman set up the first class for DeafBlind people. I was the first person who went there. I loved it. The teacher was hearing with an interpreter. I learned braille quickly there because I’m a book worm, I love reading so it was really important to me
to learn braille. I did that for a little while, and then I made a request for a library for the blind, which helped me to read right away. If reading was no longer available to me, I would have forgotten all kinds of things and been unable to learn.
Then, I went to Gallaudet University through the Helen Keller National Center. They tested me, said I was smart, and encouraged me to go to college. I said no, I was scared of the interpreting situation and the braille situation, especially for tests; what would I do? I visited anyway, and decided I would go for it. I went there for five and a half years and then graduated at the top of my class! It was a challenge but my husband was very supportive the whole time
Hello, my name is Marianne and I’m DeafBlind. I grew up in my hometown of Quincy, Massachusetts. I was born Deaf, but later became blind in my 30s. My field of vision started to narrow. I needed to learn tactile signing, and started by receiving signs with both hands. Later, as I got older, I only needed to use one. My vision got worse and worse, and I needed intense glasses in order to read. As my field of vision got even smaller, I realized I couldn’t read anymore. That was when I started using large print. But thank God there is now technology that can make letters larger and make the font bolder. I can see large letters on my iPhone and iPad. That is amazing for some legally blind people.
But maybe in the future, I don’t know if I will become fully blind, but right now, I practice with braille in case maybe one day I need it. I started taking a braille class, but it’s hard to learn if you only take the class once a week or twice a month. You forget things. So really, I need to teach myself by reading more, but sometimes I feel lazy and I don’t want to! I have to force myself to learn, learning isn’t easy, but one day I’ll get there with the help of technology and people who want to help me learn.
When I realized that I was losing my vision, I was in denial until people really encouraged me, so I started learning when I was still living in Quincy. I learned braille with the help of one teacher, and that was probably ten years ago now. Then I worked on it and then the teacher left and I stopped learning because I could still mostly read. Then I moved here and I started struggling to read, which was very frustrating. So I was on the fence about working more on my braille skills. But then I decided to take a really serious braille class when I was 59 years old. There were some scheduling conflicts and cancelations for four months which didn’t make me happy, but hopefully a really good class will start on Friday with another man named Jerry.
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