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Spring 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Jamie Pope, Executive Director of AADB and Randy Pope, Private Consultant on Support Service Providers, Silver Springs, MD

Abstract: A couple shared their story at the 2009 Texas Symposium on Deafblindness, showing how people who are deafblind can lead lives of purpose, satisfaction, and joy.

Keywords: Family Wisdom, deafblind, American Association of the Deaf-Blind, AADB, adult life, marriage, Texas Symposium on Deafblindness

image008 Hello! We recently did two presentations on Living the Good Life and A Glimpse into Our Lives as a Deaf-Blind Married Couple at the Texas Symposium, Satisfaction, Joy, and Purpose in the Lives of Students who are Deafblind and the People Who Care, hosted by the Texas Deafblind Project, this past February. We were asked to write this article to share excerpts from our presentations with families who have a family member who is deaf-blind.

Deaf-blind People Can Live Good Lives

To introduce ourselves, we are both deaf-blind. Jamie: I became deaf-blind at age 2½, which was caused by serious illness with high fever. The fever damaged my optic and auditory nerves, which resulted in my low vision and hard of hearing. The fever also caused my balance difficulties. Randy: I have Ushers Syndrome, Type II. Although, I was born hard of hearing, I did not find out I had Ushers until age 35 when I experienced significant vision loss. To this day, I only have central vision, very little peripheral vision, and am hard of hearing.

Living the Good Life Starts with Family-No Surprise!

We have four things in common with our families: love, can-do attitude, involvement, and humor. Our parents love for us came through many times even though communication was not perfect. They have can-do attitudes, believing in us and that we can accomplish many things. They made sure we were involved in family activities, did chores the same as other family members, and have some experience with developmental and age-appropriate tasks and milestones the same as other kids our age. We learned from our families early on that having a good sense of humor is an important social skill, as it makes people happy and contributes to living a good life.

Education is a Stepping Stone to a Good Life.

Jamie: My parents strongly believed that getting a good education was my key to a successful future as a deaf-blind person. During mainstreamed elementary school years, I was very fortunate to have a caring itinerant teacher who went beyond reading, 'riting, and 'rithmetic to teach me about feelings, relationships, friendships, and shortcuts to doing things like counting money faster. This extra help early on was a boost for me in later years.

Randy: My parents are also strong believers in getting a good education for me. In my elementary and junior high school years, I was taught lipreading and speech. Later in high school, I used total communication, which is signing and using speech at the same time. My education evolved around preparing myself for college.

Transition to the Good Life.

Jamie: I had three pivotal experiences during high school that helped me successfully transition to college and beyond. I was an American Red Cross volunteer, and devoted many hours to help students at Michigan School for the Blind with recreation activities. My first job was in my family's farm market where my dad taught me to not to be too shy to address customers and say, hello, how are you, and how may I help you? Also, I learned how to navigate the public transportation system in my hometown at the same time my peers were learning how to drive. Learning the bus system helped to meet my needs for independence at that time and now.

Randy: For my first job, I worked in a pet store taking care of animals, including a monkey. My next job was at McDonald's restaurant as a bun boy. My responsibility was to ensure the buns were toasted and prepared for the meat to be placed on them. I also served as a cook, often cooking 96 meats at one time. These two jobs during my transition period were great learning experiences.

Let the Good Life Begin!

Jamie: My parents encouraged me to go to Gallaudet University even though I got acceptance letters from other universities in Michigan. They believed Gallaudet would provide me with a well-rounded education beyond academics, e.g., fine tune my social skills, and broaden my world. They were right! I graduated with B.A. in Social Work and went on to get a M.S.W. from Catholic University of America.

I had various jobs during college and after graduation. The two most memorable jobs I had were to work as a maid at Yellowstone National Park one summer, and as a tutor of Algebra I to college prep students. I've been a counselor/social worker and technical assistance specialist. Now I am Executive Director of the American Association of the Deaf-Blind (AADB).

Randy: My time in college only lasted one semester; however, I was able to enter into the Tool and Die maker trade, which only employed the highest technical people in this field. This kind of job depends heavily on good vision; I was forced to leave when my vision deteriorated twenty years later. Now I'm working as a volunteer web administrator and public relations specialist for AADB.

The Joy of Family

Randy: I have 7 sons from a previous marriage. Yep, 7 boys! Oh joy! They are now all grown (ages 20 - 34) and doing well. All except two have engineering degrees, or currently are majoring in engineering in college. The other two are working as a computer network administrator and welder. When my vision deteriorated and my ex-wife left the family, I quit work to take care of my boys full-time. There have been difficult times, of course; but my devotion to my sons has paid off, and they are all doing quite well in their own lives right now.

Jamie: Like many little girls, I dreamed of getting married, but interestingly, I never dreamed of becoming a Pope! Randy and I will celebrate our 5th anniversary in May. Randy and I are a team in our marriage. We help each other with mobility, reading, and communication needs. For example, when we enter a self-serve restaurant where the only menu is posted up high, I am not able to see what they have due to my low vision. Randy, on the other hand, can see pretty well straight ahead at a distance, so he reads me the menu. However, he sometimes has difficulty seeing chairs, tables, and people around him; but since I don't have tunnel vision and I can see things close up, I can see enough to guide him to the empty table to sit down and eat. We take the famous quote, opposites attract to a new level in our marriage!

The Good Life Continues

image010Social contact with other deaf-blind friends is important to us. AADB is one place to find deaf-blind friends from all over. AADB is famous for national conferences where hundreds of deaf-blind people come together for networking, support and training with the help of support service providers (SSPs). Check out AADB's website for more info on what we do .

Local and state deaf-blind organizations or groups are also places to socialize with deaf-blind friends. In Texas, there is the Texas Association of the Deaf-Blind. (Contact Kim Powers-Smith at <>)

Helen Keller once said, Life is a daring adventure or nothing. That quote fits our life to a T and we're deaf-blind too! Jamie: I had many adventures, but two stand out: 1) went white water rafting on a wild river; and 2) participated in a Discovery program that had various challenging activities including climbing alone over and through a jumble of wires suspended high up between trees. Randy: Likewise, too many adventures to name here, but my most memorable adventure was when I went body surfing on the Pacific Ocean.

We hope we clearly demonstrated that people who are deaf-blind can lead lives of satisfaction, joy, and purpose!