Ramona Rice is a very outspoken disability rights advocate who lives in Utah near her children and grandchildren. “I am always banter-teasing with a smile on my face. I am most joyous with my Golden Retriever, Stormy, at my side,” she says. Rice has a condition called Usher Syndrome type 2.
According to the National Eye Institute:
Children with type 2 Usher syndrome are born with moderate to severe hearing loss but normal balance. Although the severity of hearing loss varies, most children with type 2 Usher syndrome can communicate orally and benefit from hearing aids. RP (retinitis pigmentosa) is usually diagnosed during late adolescence in people with type 2 Usher syndrome.
Additional information is available on the National Eye Institute’s website.
Rice says, “I should have been diagnosed around 12 years old, but wasn’t until I was 38, with retinitis pigmentosa, then at 42 with Usher Syndrome type 2.” She currently has about five degrees of tunnel vision in both eyes. Rice’s children were in their teens when she was diagnosed; she always chose to communicate verbally with them and never used sign language.
When asked whether her hearing has gotten worse over the years, she explained:
Yes and no. No, it really hasn’t deteriorated but with the loss of my vision, it affected my hearing. For example, I read lips all my life and would make sounds of the words in my head as I read lips. As my vision worsened, I couldn’t read lips. Therefore, I couldn’t make out the words’ sound in my head. So with a newly advanced hearing technology, Oticon, I am able to hear very well but only through the Bluetooth to my hearing aids from devices like the phone, computer, TV, and radio. But to use the Oticon microphone to listen to people —it’s terrible without bass in it—it’s hard for me to make out their words.
While growing up, Rice had many friends in the deaf community and communicated with them via sign language. She was verbal with family but had a speech impediment. In 8th grade, Rice moved to a new city. There was no one to sign with so she went to speech therapy. She says, “I made new friends but it wasn’t the same like with my deaf friends. In high school, from loneliness, I ran track and field and did well.” She is still in touch with her track coach.
In college, Rice had difficulties. She explained, “Due to my then-unknown condition of Usher Syndrome type 2, I struggled in colleges without any adaptive technologies or assistance available. I attended Utah Community College in an Applied Technology program. I attended several more colleges to obtain a degree but without any available resources, I was short-changed. I applaud all deafblind students completing their career goals with the help of available resources provided for them.”
Rice had her first job at age 12. Her employment history includes working at a nursing home, as a physical therapy aide, and as an executive secretary. Rice worked for a retail company for 7 years. She describes the position this way: “There were three departments in one company. I was asked by District and Regional Managers to help them with inventory loss, auditing, etc.”
Her last job was as an assistant vice president at a bank. Her responsibilities were sales, service, and operations. By 2002, her vision had deteriorated and she was making too many mistakes. That is when she stopped working and applied for SSDI. She says her position at the bank was her favorite job.
In 2002, Rice got her first piece of assistive technology: ZoomText. As AccessWorld readers most likely know, ZoomText is a screen magnifier from Vispero which enlarges what is on the screen. She uses it now, but she did not originally want to use the program.
Currently, she uses ZoomText with her Windows laptop. With her Apple products (iPhone, iPad, and iMac), she uses Zoom and VoiceOver. She explains, “Being deafblind— I never know which senses will be a challenge for me on any given day. So I use ZoomText and VoiceOver.”
Her vision loss might have affected her work, but it did not affect her spirit. She says, “To this day, I miss working and interacting with the public. So, I turned my passion towards nonprofit work to assist people and animals.” She continues:
Before I share my work, there is a backstory to why I do what I do these days. Being born hard of hearing, and without any support system from my family or schools that I attended, I would work two or three times harder than anyone else— just so I could feel that I was in their "league" as a normal child than as a "deaf and dumb"child. Fast forward:I am a firm believer in using my multi-tasking skills and more to help as many people and animals as I could.
Rice works on more than one project at a time, planning four months ahead. She lists five children's books, a proclamation for US military veterans, an anthology book, and assisting Freedom Fidos with a business plan as current projects.
This past year, Rice developed Non-Profit Advocacy in order to collaborate with different non-profit organizations. The purpose is to create awareness and increase fundraising for them. “It is not a registered/filed non-profit organization," she explains, "because I work in many states for different non-profit organizations.”
This year, she asked Governor Kemp of Georgia to proclaim Service Dogs for Veterans Awareness Week on behalf of Freedom Fidos’ work to help veterans receive a working service dog.
With the help of veteran leaders, Rice wants to convince every state to proclaim/declare a Service Dogs for Veterans Awareness Week. She wants businesses to be aware of the importance of giving access to our military heroes and their working dogs. “My goal is to get as many veteran leaders in each state to collaborate with me to create a declaration/proclamation and ask for their state governor to support and sign the document. Each state has a rule whether they rather declare temporarily or proclaim permanently.”
Rice’s many accomplishments include:
- Created a book, Walk in My Shoes: An Anthology on Usher Syndrome. Proceeds donated to Usher Syndrome Coalition. This work is a compilation of true stories from various contributors.
- Created a book, Walk in My Paws - An Anthology: Working Service Dogs, to support Freedom Fidos. Also a compilation of true stories from various contributors, including from this author. All proceeds go to Freedom Fidos.
- Sanderson Deaf Center. Rice assisted with their building upgrades, ASL program, and more.
- Created the Deaf-blind Advocacy of Utah committee. “I worked closely with Utah deafblind specialists to locate many deafblind individuals to receive appropriate resources,” Rice explains.
- Planned a 2-day training conference in Park City, Utah, for the Utah Council for the Blind.
Rice is particularly proud of being able to collaborate with many non-profit organizations to create awareness around a range of disabilities and "to fight for access rights in transportation, housing, businesses, and hospitals for working service dogs and their handlers." Rice has no plans to slow down, saying:
I am who I am because of my past and present. I feel that as a deafblind person, I must do more to even be on the same wavelength mentally, physically, and socially with people who are not disabled. It sounds ridiculous, I know. So everything I have done— I still feel very unfulfilled. That is why I am constantly looking to do more. Stupid, I know. I should do R and R at my age.
Walk in My Paws is currently available in regular print, large print, and Kindle from Amazon It is currently in production for NLS Bard.
Walk in My Shoes is available from NLS BARD and regular and large print and Kindle from Amazon.
This article is made possible in part by generous funding from the James H. and Alice Teubert Charitable Trust, Huntington, West Virginia.
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- An Interview with Michael Hingson, CEO of the Do More Foundation by Deborah Kendrick
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