I’m Mohamed, Accessible Pharmacy Services for the Blind’s student intern. I had the opportunity to talk with Tara Brown-Ogilvie, the New England Regional Representative for the Helen Keller National Center for DeafBlind Youth and Adults (HKNC). Helen Keller Services (HKS) is a large and expansive group of devoted individuals serving the blind and visually impaired. HKS has been operating for over a hundred years, starting in 1893. While HKS is comprised of multiple divisions with their own goals, here we’ll be discussing HKNC. HKNC’s focus is the deafblind community; individuals who have lost both sight and hearing in some way. Read more to learn about some of the fantastic work they do.
Tara is the point of contact for the New England area, encompassing places such as Massachusetts, New Hampshire, Vermont, Connecticut, Rhode Island, and Maine. However, HKNC is headquartered in Sands Point, New York. As she puts it, “…I’m kind of a point person when it comes to state agencies and stakeholders, community organizations, family organizations, and anyone or anything that has to do with combined vision and hearing loss. So, I could be affiliated with the School for the Deaf or the Commission for the Blind. And if there’s any overlap, then I can provide professional development training and refer people to resources, as well as assist persons who have some form of combined vision and hearing loss to go to our training center in New York.”
When asked about the specifics of her work, Tara said: “…I kind of have like the micro to the macro. The micro is like this, I have people who have just learned that they’re going to lose their vision or hearing for the first time, and they’ll contact me and say, “what do I do?” And after asking which state they’re in, I contact their local services and get them connected. For example, I recently worked with someone who was moving to the state of New Hampshire and explained where they can get support services such as para-transit in their local area. I also helped a woman get set up with the local fire department as she was profoundly deaf with low vision. She was new to town and had a special alert system. So just alerting them that there’s a deaf individual in the area who uses specialized equipment. If there were an emergency and you needed to enter her home, you could alert her through a doorbell flasher, which is actually a vibrating pager attached to her person… And kind of just making sure we check all the boxes of assistive technology, employment, independent living, communication, and also making sure the person has a safe place to live.”
HKNC works with anyone who is deafblind, ages 16 and up. Not only does Tara work with individuals, but she also guides schools, state agencies, local organizations on how to interact with someone who is deafblind and how to make services more accessible. On that topic, she said “…If they’re curious about how to use refreshable braille displays, or they’re not quite sure how to get a tactile sign language interpreter, that’s something I can do as a point of reference to provide resources. I’m in and out of a lot of meetings and I’m on a lot of deafblind advisory boards for different states. Sometimes I’m also just an extra voice at the table saying, “Hey, why don’t you consider having an on-call interpreter or having ‘this’ or having ‘that’?” So just being that person who discusses it at a state level, what’s going on and how we could better include the deafblind community.
At a regional level, I’m also trying to promote professional development and educational awareness. HKNC is constantly putting out online courses around topics related to deafblindness such as assistive technology. Another example is online courses on “Haptics” which is a touch signal system that we use to incorporate more environmental information to someone while you’re having a conversation with them. Because we know that language is 30% of what you actually say, and 70% how you say it. This can include how you look, how your demeanor is, what your tone is, who’s in the room, what’s the context. So, these other factors are leading to what someone’s trying to tell you, and haptics help to provide that additional information.
While Tara has only been in her regional representative position since the start of 2020, she was first introduced to HKNC in 2011, as a sign language interpreting intern. She has also earned her Master’s in Blind Rehabilitation and Orientation and Mobility. After earning her master’s degree, she worked at HKNC’s headquarters for a few years as an orientation and mobility specialist and senior instructor. Now in the process of pursuing her Ph.D. in Special Education with an emphasis in deafblindness, she’s returned as the New England Regional Representative of HKNC.
When asked what led her to this career path, Tara replied: “…I’m originally from Florida, and I didn’t know any deaf individuals or blind individuals. I didn’t interact with anyone who had a disability. But for some reason, I was just really interested in sign language and just wanted to learn it. I don’t know why. And I just picked up some books and tried to teach myself and it was okay. I could say a few things, but it wasn’t getting too far. So, when I was 10, I was learning “cookie,” “beautiful,” and “how are you?” [in sign language]. And then it wasn’t until I was 17 and could dual enroll at a community college in my senior year of high school that I actually got to take an ASL class and I just loved it. I just picked it up so quickly. And someone approached me and said, ‘Hey, you should become a sign language interpreter.’ And I didn’t know that was a profession. So, I decided to get my bachelor’s in interpreting, and then while I was doing my internship for interpreting, I went to HKNC to learn how to do tactile ASL, which is hand on hand sign language, where someone feels what you’re saying. And I just fell in love with the center. I stayed there for three weeks in the dorms, and I was there working with people day and night. And after that, I decided to get my master’s in blind rehabilitation and orientation and mobility. And when I finished that, I came back as a full-time employee and just loved it. I just loved every minute of it.”
Tara’s love for HKNC and the work they do together can’t be missed. As I was told, “the ultimate mission of the Helen Keller National Center is to empower deafblind individuals or those who have a variety of combined vision and hearing loss to live, work, and thrive in the community of their choice.” Tara went more in-depth into the topic, saying, “…the way that I like to say is ‘live the best life, just not be held back’, essentially, be able to do whatever you want, whether you were born deafblind, or you were born as a deaf individual who grew up always as a deaf person, and then suddenly started to lose vision due to age or another condition. We want to bring you back to where you were before. So, a lot of what we do at the residential rehabilitation center is based on a transdisciplinary team that works to create a full class schedule. So, people come and stay in dorms, we have a cafeteria, a gym, and everything. And then they go to full classes for maybe 16 weeks and be able to get all those skills that would help them go back to where they were or advance them into the next step or next chapter of their life. That includes orientation and mobility, assistive technology, communication, independent living, employment, and more. We also have a small arts program and woodworking shop. So pretty much we just want to give people the support they need to be able to go back to work and live in their community of choice.”
HKNC, while being headquartered in New York, serves the entire United States. That includes all the 50 states and US territories such as Guam, the Virgin Islands, Samoa, and Puerto Rico. While being unable to offer direct services to all these areas, HKNC has regional representatives across the country. These regional representatives are the people anyone in their service area can go to, to ask for guidance or assistance. For example, a regional representative would be able to point a deafblind individual to the National Deafblind Equipment Distribution Program, also known as the iCanConnect program where they can request free equipment to make telecommunications, advanced communications, and internet access accessible. HKNC also provides in-person training to individuals around the country
HKNC has about 125 employees who comprise only that branch of the larger Helen Keller Services. That makes up the instructors that are physically at the residence, dorm staff, cafeteria staff, regional representatives, and administrators, who help with the admissions process, community outreach, and professional development. HKNC also has a research department and now has started to expand some local services with deafblind specialists. These specialists can work outside ˙of HKNC’s home state of New York and travel to provide in-person services to deafblind individuals.
Regarding volunteers, “we have support service providers or SSPs, and they volunteer to provide human guide and some very light assistance as well as some communication facilitation for persons who are deafblind who might need to go to a grocery store or to the mall to pick out some clothes. They might also assist that person who is new to their vision and hearing loss to be able to guide them through a crowded area, being able to point out, environmental information to them. For example, If they’re looking for a shirt that’s blue and has stripes, they relay some of that information to that person. And so, we have an SSP coordinator and volunteer coordinator. We also just have some really sweet ladies who like to come to the center and work the front desk, like organize the braille materials. We used to have a small library, which is now more of an archive. Sometimes we have SSPs come, and I used to train them in the human guide when I worked at the center.”
If you’re interested in getting involved with HKNC through volunteer work, you should contact Allison Burrows at firstname.lastname@example.org!
HKNC had to close its offices due to the pandemic but has partially reopened with half-capacity. During my talk with Tara she explained the situation like this, “…Instead of having our maximum of 30, we’re going to start with 15. We have a lot of new staff that are starting with us. And so, there’s been a lot of new training and getting everything set up and then also trying to make new modifications, to be mindful of COVID protocols and safety. In the past, we’d have two people be in one dorm room together, but now everyone’s going to be separate.” Including that, HKNC has also set aside “quarantine rooms” in the event that someone needs to isolate when showing symptoms of Covid-19. Although there have been many changes and restrictions set, Tara believes this will be a net positive. As she described, “…a lot of people have been waiting almost a year and a half to be able to come back. We had students on campus when we closed but we did continue virtually after a short break. So, some of those students have been virtual this whole time and now are so excited to come back in person. And what’s great about all of that is now we’re moving forward with virtual training and also hybrid training, which I think is really exciting. And I’m looking forward to how that might pan out in the future where we might do like a pre-assessment virtually, then have the hands-on training, like chopping vegetables and using a cane, in person.”
HKNC has hopes of conducting more hybrid/remote teaching as it would allow them to expand their reach and include more individuals in their training/teaching. More specifically Tara added, “I feel like there have been some individuals in the past who may not have the ability to just come to New York for 16 weeks. Maybe they have a full-time job or kids or other obligations that make it difficult for them to take that kind of time off, away from work or whatever it may be. So I think that we can offer a kind of ‘night classes’ in a virtual component, if that works for that individual, if they have access and that’s a good system for them, they can just take advantage of a new way to reach out to people across the nation. We could be working with people in Michigan, in California, in Guam… There’s also been a few people who may have had additional medical conditions that made it difficult for them to travel or just be away for too long. So, we’ve also been able to work with some individuals who are immune-compromised or previously needed to have more one-on-one supports in the home that doesn’t transfer well to a dormitory lifestyle. So, we’ve been able to enhance our ability to provide services to a greater population in the US, so I think that’s been helpful.”
Here is a quote from my conversation with Tara about why she is proud to work for HKNC. It truly shows her dedication and passion for the work she does.
Tara: “One thing that I love about working at HKNC is that they’re no limits. There are no low expectations for individuals. You think the highest of everyone. If something doesn’t work, we’re going to try something else. And I love that. Outside of the organization, it can be difficult when you mentioned that someone’s deafblind and they’ll say “what?! Deaf – and – blind… how did they get out of the front door in the morning? I don’t know if I could live like that.” There can be this really negative stigma of what it is like to be a person with combined vision and hearing loss from an outsider’s perspective who has no context, but at HKNC, I have a lot of colleagues who work with me who have traveled the world, who have amazing experiences, who are brilliant. And it’s just so nice to be able to see them flourish and be their best selves. And I’m honored to work with them and to be in that environment where I can encourage people who are young, who want to move forward, that they can do it if they want to. And there are lots of ways you can try. And I just really liked that mindset that we have, that we want to push people to be the greatest versions of themselves. And we don’t hold people back. And I love to see the growth. I love to see it. I mean, sometimes some circumstances are tough for everyone and that’s just how it is, and you make the best of the situation. But other times I just really love seeing how people grow. And it’s such a nice thing to do at work. When you get to see that and know that the work that you are doing by putting those foundations, getting the resources, getting people set up with the skills, training, or the people that they need, that they’re able to accomplish what they want out of life. And that just kind of really fills my tank.”
Thank you, Tara! To learn more about Tara and her work with the Helen Keller National Center for DeafBlind Youths and Adults, please visit: https://www.helenkeller.org/hknc