Massachusetts Commission for the Blind
DeafBlind Awareness Week – Consumer Spotlight: Lori Siedman
The following video is a nine-question interview with Lori Siedman. At the start of each question, a black slate appears with the question typed in white text. A voiceover reads the question. Following the question, Lori appears on the screen in a double box. Lori is in the box on the left. Lori is a white woman with dark brown curly hair. She is wearing brown glasses, a black shirt, a sterling silver starfish necklace, and sterling silver earrings. She speaks directly into the camera as she provides her response. Shari Coon, who provided American Sign Language interpretation, is in the box on the right.
Question: Tell us about yourself.
Lori Siedman: Hello. My name is Lori Siedman, and this is my name sign. I work at the Massachusetts Commission for the Deaf and Hard of Hearing as a referral specialist. I was born Deaf. I became legally blind at age 11 because of Usher syndrome, type 1, so I'm Deaf and legally blind. And that diagnosis has been since age 11, like I said, and it's been over 30 years since I've had that diagnosis now and identified as DeafBlind.
Question: What is your connection to the DeafBlind community?
Lori Siedman: I'm very involved in the DeafBlind community because that's where there is mutual understanding, shared understanding about our lived experience, our culture, and I think I've been a role model for the DeafBlind community to show, you know, what a successful life can look like professionally. I'm also very involved personally in fitness. I do CrossFit. I'm known as an advocate in the community. So, I think it's important to set that example of DeafBlind empowerment and what DeafBlind people can accomplish. I think it's important to understand what the barriers are that DeafBlind people face and how those barriers can be broken down. So, it can be challenging to be Deaf and also unable to see. That is a double barrier. And it's unique because there are people who have one or the other, maybe they can't hear or can't see, but to experience both of those means that you do things differently, maybe in a tactile way, for example. So, it's important to understand what the barriers are and what the needs are that DeafBlind people have.
Question: Tell us about your role at the Massachusetts Commission for the Deaf and Hard of Hearing and what your day-to-day workday is like.
Lori Siedman: My current role at the Massachusetts Commission for the Deaf and Hard of Hearing is in the referral department. I'm a referral specialist for the Southeast region and I coordinate interpreter services. So, if entities like schools, companies, different organizations, make a request for an interpreter, it's my job to work on securing those services. I book the interpreter, I'm sort of the intermediary to arrange for communication access for Deaf, Hard of Hearing, LateDeafened, and DeafBlind people, whether that be users of American Sign Language, people who use ASL interpreters, people who use certified Deaf interpreters, possibly LateDeafened people who might prefer to use CART, which is captioning. So, it depends on the needs of the individual. It might be a DeadBlind person with no vision who uses tactile ASL. It might be someone with close vision needs where they use close range signing. There are a variety of methods of communication that are utilized by a wide range of people depending on what their communication needs are. So, for example, I use American Sign Language, I use interpreters, not every day for my job, but if I'm in an audience of an event, it's difficult for me to see everything that's going on. So sometimes in some situations I will use an interpreter and utilize something called Protactile, which is a way to cue me in a tactile manner what the visual information is that I can't see going on in the room, whether it's the expressions and reactions of the audience. If I'm giving a presentation, the layout of the physical space, who's coming and going, that type of information can be conveyed while I'm giving a presentation. Also, I worked for many years at a nonprofit organization that serves the Deaf community called DEAF, Inc. I was the Regional Director for Independent Living Services in the Boston area, and I would oversee the Independent Living program services for Greater Boston and do that advocacy work and direct service work working with Deaf consumers about whatever their specific needs are, whether it be education, access to employment, various services. So, I did that for a number of years and then I worked for DPC, the Disability Policy Consortium and my title there was Director of Deaf Services in the My Ombudsman program. So that is a program that serves MassHealth members and does advocacy in the healthcare space. So that was really the bulk of my professional experience before coming to MCDHH. First, many years at DEAF, Inc. and then DPC and now, like you said, I recently joined the referral team at the Commission for the Deaf and Hard of Hearing.
Question: Did you ever use assistive technology in any of your jobs, and if so, how important was that for you?
Lori Siedman: That’s a good question. In the past when I worked at DEAF, Inc. there was a lot of paperwork and reading involved in my job, so I used a CCTV due to eye fatigue and that really helped me handle that part of the job. That was before I had cataract surgery and reading information on paper was much more of a challenge. So the computer gave me control over the size of the font, the contrast, and it made it more accessible for me. I also use visual flashing fire alarms. I also use vibrating devices as well for communication access and awareness about my environment. Like I said, I have had cataract surgery at this point which helps me see my computer better. I do use regular font size, but I use dark mode and sometimes I need to make changes to the features just to meet my visual access needs, not as much as I did before, but still on occasion. And so yes, for my everyday life I do use assistive technology. I don't have a CCTV at home currently. I don't use as much paper. I don't have as much paper reading to do as I used to, but I also can use magnification when I do need to do that, but I'm primarily use the computer at this point.
Question: If you come across any obstacles, whether it be at home or at work, how do you approach the situation?
Lori Siedman: Yes, there are barriers that happen during everyday life as a real result of being both a Deaf person as well as a blind person. The world isn't necessarily designed for us, so sometimes I miss information because I don't hear it. Communicating with people who don't know sign language is a challenge. Sometimes at night it's difficult to see well. That's a barrier also. I can't drive because of my vision impairment, so that limits my ability to go out anytime. And fortunately, Massachusetts has a program through The RIDE which offers Uber or Lyft rides at a discounted rate and that has really helped me a great deal with my ability to get out and about, and that really translates to independence. You do have a limited number per month, so certainly there's still that limitation, but it allows me to get out. I can go out to visit friends, to go out to eat with friends. And when it comes to communication, I socialize with both Deaf, DeafBlind, and hearing people as well who know sign language. I do have to think about when I go out to eat, what the lighting will be inside any given restaurant. Where I live, there are a lot of great restaurants. Not all of them have the best lighting, so I might decide to go to those places during the day and make sure I'm doing it when the lighting is bright enough that I'll not experience so many issues trying to see and communicate. So yes, those are part of my everyday life, those barriers, I face them all the time. In my prior job at DEAF, Inc., I was in a space, an environment where they were very familiar with the needs of DeafBlind people and Deaf people, more so Deaf people than they were aware of the needs of DeafBlind people. But certainly, it was very, very different when I moved to an agency where I was the only Deaf staff there. And so, there was a learning curve for the other staff of that agency. And I did a lot of educating and over time people gained a better understanding about my needs as a DeafBlind person. And you know, sometimes those barriers were removed. Other times it took a lot longer to really make those barriers disappear. So, it takes a lot of work to educate people about Deaf culture, DeafBlind culture, for people who are not Deaf or blind and really have no schema for understanding, it's a lot of new information for them, so that's something that it has always been a part of my role is to do that education piece.
Question: Why do you feel your work is so important?
Lori Siedman: My work is important because personally it helps me feel productive and keeps me busy and I feel like I make a difference for the DeafBlind community. And also, I help educate people about what communication access is. So right now, we're using an interpreter for this conversation. Without an interpreter, how else would we communicate with each other and how could we, you know, bridge that communication divide? I have information to share. You have questions to ask. We wouldn't be able to do that effectively if we didn't have the right communication access services in place. That creates an equal playing field. So, this is an example right now of what communication access is. So Deaf, Hard of Hearing, LateDeafened, and DeafBlind people have a variety of needs and it's my job to help people understand what that entails. I mean, if you have an individual with health issues who needs to go see a specialist, that's a complex communication environment, and you have a range of people, some who may or may not have varying levels of proficiency in written English, that's not always an accessible way. So, you might need to bring in the appropriate interpreter to meet the needs of that individual in that context. So, I'm passionate about the advocacy I do and the education I do around communication access for Deaf, Hard of Hearing, LateDeafened, and DeafBlind people. Vision is an important consideration as well. Understanding if someone needs to use tactile ASL, if they have close vision, if maybe they use something called tracking, where they hold just the wrist of the interpreter to keep the signing in their visual field, there's a wide range of needs and it's important that people understand that.
Question: Why do you feel spreading the word about DeafBlind Awareness Week and the DeafBlind community is so important?
Lori Siedman: It's very important for the DeafBlind community. Helen Keller's birthday was, I believe, the 27th of June, the last week of June at any rate. And she's been historically a strong role model about what DeafBlind people can accomplish and what it means to tear down barriers. And she's well known throughout the entire world, right? Not just in the Deaf or DeafBlind community, but everyone knows of Helen Keller and what she accomplished in her life. So, in today's time, you know, we as a community still face difficult challenges, frustrating barriers, and education is more important than ever about the needs of the DeafBlind community because if people don't understand, then that support won't be there.
Question: Do you have any advice for people who are having a difficult time adjusting to life with a visual and or a hearing impairment?
Lori Siedman: I want people to know they're not alone. I experienced that process. I thought as a young child I was just Deaf. And when I was 11, I found out that I have Usher syndrome and that I would be losing my vision. That is something that is extremely traumatic when you get that news, and it takes time to digest it and turn a negative into a positive in your life. But it's important not to give up, to learn strategies, and know that you can be successful and that you're not in this by yourself. You're not the only one who's dealt with it. That there's a community of people who understand the challenges, how difficult it is, what the frustrations and barriers are. We understand. We live it too. And you're not alone. It's really important to find those role models and keep a sense of hope and know that you might feel that you're in a dark place, literally and figuratively, but that you will get through and continue and find the light. Hope is out there. People jump to conclusions that they won't be able to do this or that, they won't be able to work, they won't be able to live independently. But that's not the case. You know, there are many people who are DeafBlind living successful, independent lives. So you just have to learn how to do things differently and it is possible. So do remember that you're not alone and to not lose hope.
Question: What is your life motto?
Lori Siedman: I would say my life motto is continue on with your journey to find the light. No two people are alike. Everyone is unique, but each and every person can do it. Don't let the barriers stop you. Know that you can break through those barriers.