Services for the Deaf and Deaf-Blind in Acadiana
Acadiana is home to several extended families who have either inherited or developed impairments to major human senses. Such impairments include various forms of deafness, as well as the syndrome of deafness and blindness called Usher syndrome. Because of the regional residence of these families, the Catholic Diocese of Lafayette has established the Deaf Action Center, a center for training and trust for both the Deaf and the Deaf-Blind, as well as their families and healthcare providers. At the Deaf Action Center (DAC), we have helped and continue to help many families lead full lives. Hereditary Healing has given me the opportunity to share with you my experience and advice in working with these families.
A major concern of the Deaf who have Usher Syndrome is the loss of vision. During my personal association with the Deaf, I have observed that at a young age night blindness begins. During high school some experience the first noticeable loss of vision. Naturally, some do experience these symptoms earlier or later in life. It is an individual progression.
My main source of reference are those I have known since their early childhood and who are now in their thirties and forties.
Loss of vision for a deaf person can limit life activities. Employment opportunities, the ability to continue driving, some of the basic freedoms and qualities of life that a deaf person can enjoy seem to slip away.
Once the vision has diminished to a certain point, assistance from others is necessary for certain activities. With proper training, however, independence can be maintained in daily living situations. Some assistance is required for certain activities. Re-training for employment or daily living skills is imperative.
Assistance from family or friends can be utilized for personal activities no longer able to be done independently. Without this network of support, many do seek assistance from a center such as the Catholic Deaf Action Center (DAC). The question of who to trust with personal business such as reading mail and paying bills. is a difficult one.
Communication methods change as vision decreases. The position (location and distance) of the person communicating with the Deaf-Blind person is important. Communication is maintained by the speaker positioning him/her self in the deaf person's line of vision. Some Deaf-Blind people maintain this degree of vision for the rest of their lives. The tactile method of sign language comes into place once the vision decreases or environmental circumstances demand tactile communication.
Another concern is that some experience isolation and neglect from family members who have not learned to sign through the years. Many families develop "Home Signs" used before blindness develops. Once this happens, however, it is more difficult for communication in the families and also in training.
The more education the person acquires at a young age will improve his chances for continued training in daily living skills, for learning Braille, and for overall quality of life. The aging process compounds all the previous concerns. Loss of independence, safety, trust, isolation and neglect are all magnified as the years increase.
In Acadiana, the need for an assisted living/nursing home facility is a dream I would like to see established. The Deaf and Deaf-Blind now are placed in nursing homes throughout the area without any true communication of ASL (American Sign Language). If we are to look at the quality of life for this population, communication is still very important as it is with all humans. Socialization and being able to communicate on a daily basis with friends or staff adds to the quality of life that the Deaf and Deaf-Blind should enjoy.
Our DAC office is a prime example of just that. We are open every day no matter what the weather conditions are, and we have a continual flow of Deaf and Deaf-Blind coming in and out of the building. Some come with a variety of needs, some come by just to say hello and know that we are there, or some come for the various activities we offer. Besides providing for the Deaf and Deaf-Blind, our office is open to persons of all disabilities or people who need our services or help with referrals to some other service agency in the community.
Through the years since I began working at the Diocese office, we have encouraged staff and contract workers to increase their skills and knowledge in ASL and Deaf Culture. Becoming a qualified signer and then being able to use this skill for tactile interpreting with the Deaf-Blind is an advantage to any interpreter. Some are not comfortable in using this skill and some refuse to do it professionally.
DAC has provided staff members training at the Helen Keller National Center (HKNC) Institute in New York and the Lighthouse in Seattle. We have also attended National Conferences and specialized workshops for the Deaf and Deaf-Blind. The Catholic Diocese of Lafayette has also provided workshop training for interpreters and professional providers throughout the state.
DAC encourages interpreters, especially new persons, to participate in social activities to become comfortable in communicating with our large population of Deaf and Deaf-Blind. My idea of "hands on learning" has proven beneficial to our office and to the community.
My next focus will be from a parent's perspective and their concerns. Initially for parents when told of a child's deafness the feelings of fear of the unknown develop. In developing an outline of topics to discuss, I used my own personal experience and the years of association with the deaf community. I am able to relate and share some of the concerns of parents with Deaf children and children who have Usher syndrome.
How do I cope with the disability? What should I to do? Where do I get the best information? And whose opinion do I trust? There are so many questions and so few answers in the beginning. Education, being open minded to ideas, and always using your own judgment as a final measure has been my method. Mistakes are made and new plans of direction are developed, but that is a parent's right. We all make mistakes with all our children; the learning process is the same for parents as it is for anyone.
Anger and hurt do happen, and the tears of frustration flow. The big "Why?" and "What next?" will pop up again and again through the years. One of the first obstacles a parent must overcome is acceptance. When parents accept their child, no matter what the circumstances, that child has all the chances in the world to succeed. Success is measured in many degrees and seen through many eyes. Pride in a child's accomplishments no matter how limited compared to the world's expectations will be beneficial to both the child and the parents.
My personal belief in the power of prayer and faith has given me the courage to go through the years and be thankful for the many blessings we have received in our life by sharing a small part of the Deaf and Deaf-Blind community's world. What we have learned from them is more than we could ever give back.
voice/tty - 337-232-3463
H K N C (Helen Keller
Lighthouse for the Blind
Services for the Deaf and Deaf-Blind in Acadiana
Louisiana Commission for the Deaf