What Am I? Deaf with a vision loss? Blind with a hearing loss? DeafBlind?
People who have both hearing and vision impairments form a diverse group. Types of the dual sensory disability are numerous (e.g., Rubella, Charge, Usher, etc.). They may be born with the combined hearing and sight difficulties or develop them later in life, or they may be born with one disability and acquire the other later on. The degree of the losses may vary from mild hearing loss and mild vision impairment to total deafness and total blindness. They may have no other impairments or additional disabilities. They may use different communication systems (e.g., oral, sign, augmentative, etc.). They may attend different educational programs and schools (e.g., self-contained classes, mainstream classes, deaf schools, blind schools, etc.). The level of support may vary from mild (e.g., at restaurant sitting at lighted table to see sign or sitting in quiet area to hear, etc.) to moderate (e.g., hearing aids, large print, etc.) to high (e.g., total tactile sign, etc.).
Such individuals with combined hearing and vision impairments have a diverse heritage and identity. If they are initially deaf or hard-of-hearing, they may grow up in the hearing world and/or in the deaf culture. If blindness or a visual loss is the first disability, or if they are originally hearing-sighted, they are immersed in the general society and/or with blind persons. And, if they are born with a dual sensory impairment, they associate with the hearing-sighted people, deaf or blind individuals and/or the deafblind community (the latter being families or adults).
When a second sensory disability emerges, or if the deafness and blindness occur later, some people may wonder about their identity. Questioning of this identity may be more likely when communication difficulties and/or mobility problems begin to separate the individuals from people and/or things, resulting in feelings of frustration, anger, loneliness and lower self-esteem. There may be uncertainty about the primary/secondary heritage and confusion about the deafblind community, since the term suggests total absence of hearing and vision. There may be anxiety about leaving the old and familiar and treading into the new and unknown.
Because of a need for a sense of belonging and being a part of a group, some people may decide to explore the deafblind community, bringing with them the prejudices, biases and experiences of their previous heritage. Upon first contact, the newcomers and/or his/her family may be astonished at the diversity within the group. The individuals may discover others similar to themselves, as in the type of deafblindness and the use of a particular alternative communication and/or mobility techniques to gain accurate information. This exposure may validate one’s being and experiences and may normalize life. The people may become comfortable using adaptive methods, and may be open to other different communication styles, either expanding their repertoire of techniques and/or using a knowledgeable “go-between” to assist in interaction among deafblind with different communication systems. There may develop an understanding of, respect for and support for one another with all the similarities and differences. Contact with the deafblind may give a model for living, effective strategies and adaptive methods, social interactions, employment, recreation and so forth. Certain behaviors, customs and ideas may be unique to the deafblind, such as not communicating when eating, getting the person’s attention by lightly touching hand/arm/shoulder, identifying oneself when starting to communicate, using adapted signing (e.g., tracking, tactile signing, Braille contractions for fingerspelling, etc.), providing slower and time-consuming verbal/sign/augmentative information, along with descriptions of physical surroundings and people’s expressions and actions. There may come a perception of oneself as a capable human being who cannot hear and see well and/or an identity as a unique individual with deafblindness.
Some people may discard their previous identity and become deafblind. Other individuals may maintain their initial identity. Still others may fluctuate between their primary/secondary heritage and the deafblind identity
Below hearing-vision-impaired adults share their perceptions as to their identity (Usher Type I adult in 20s, Usher Type I adult in 40s, Usher Type I adult in 50s, Usher Type II adult in 20s, Usher Type II adult in 30s, Usher Type II adult in 50s, Usher Type III adult, Retrolental Fibroplasia/Meniere’s Disease adult, Norrie’s adult).
Usher Type I adult in 20s:
“I feel like a deaf person with a vision problem. I have Usher Type 1. I am in mid 20s and first diagnosed to have Usher when I was 15 years old. At first it is really hard for me to accept because I feel lonely, depressed, withdrawn from social activities and not see any other Usher people like me. I finally accepted when I learned a lot of new things from a person who have Usher and who introduced me to other people with Usher. I realized that many people have Usher same as me. I do sometimes have balance problems when walking and cannot walk straight but not often. I do frequently bump and have accidents with other people because I didn't see or know that other person is near me when I am walking or standing. It made me so frustrated with other people who blamed me; they didn't understand or didn't know that I have Usher, so I have to ignore them and keep on with my life. I hate to see people blame me all the time. Also, I cannot see well in dark room or night time when there are no lights on or street lights; when there are a lot of street lights I can see okay. When I went to club where there is crowd and no lights on, it is very dark and I end up lost because I didn't see my friends had gone somewhere different. It hurt me a lot. Lucky I have some friends who do understand Usher and support me sometimes when they asked me if I need help. The problem I faced in everyday life is communication. I cannot read or follow when deaf people in large group are signing too fast. I end up feeling behind and cannot catch up with the conversation, and miss the information. It really gives me a hard time and makes me confused. I feel comfortable to follow one or two deaf people at a time; it is much easier for me to follow them than in large group. I can read in any size font, either in small font (for example, newspaper print) or large font; large font is much better because it give me less stress. Right now I have about 10 degrees left in my vision. I have only a problem with peripheral vision (visual field). It is getting narrower and I have tunnel vision now, but it is not much difference since I first was diagnosed at 15 years old. It doesn’t stop me from doing things. I have a job working in a bank doing data entry. I am enjoying the job. I have some friends who learned about Usher and supported me, and make me feel better than before. I do let some new people know that I have ushers so they can’t blame me and I can feel comfortable with others. If closed mind, it shows a negative way in not letting them know that I have Usher and it can make things worse. It is the best thing to tell people so they can understand and support me; it shows a positive mind. I consider myself to be deaf with a vision problem because I have Usher Type 1.”
Usher Type I adult in 40s:
“I am deaf with a vision problem. I am an active lady who loves to go out anywhere with deaf or deaf-blind groups. One problem is that I have little vision that I can't see people and can't tell what they sign. I need intervener who can interpret to me what they are talking about and what is happening around me that helps me to understand what I am dealing with. I love to socialize a lot as sometimes it is hard to do that due to deafness with little vision. It is like silent world of darkness because you don't know what is down there for sure.”
Usher Type I adult in 50s:
“Let me give you three separate answers. First, I would say that I was a student, Second, I would say as consumer, and third, I would say as professional. Smile!!!
As student, I was deaf with visual problems.
As consumer, I am deafblind
As professional, I am deafblind
As student, I did have plenty of vision and I belonged to deaf community. I felt more comfortable in deaf community in many ways. I was able to read regular print and was able to see far away objects. I accepted deafness since birth. I was able to do speechreading so well. I was able to play sports.
As consumer, I am deafblind. I can't see anything; just read braille. I miss my vision so much. I can communicate with sign language. I rely on anyone who can be my eyes and ears. I follow Internet on computer. I do have understandable speech if anyone is patient to follow my speech.
As professional, I am deafblind in deaf community. Why? Because growing up in deaf community plus in hearing community, I can participate in many deaf events, can communicate in sign language and fit in deaf community (signers, interpreters, TTY, computer online, etc.) Somehow, deafblind in blind community, because of reading materials like braille books and Braille magazines, plus using Braille display for computer. Deafblind in multi-community, that means that deafblind from many communities into one deafblind community. Deafblind can be in community with other deafblind, no matter what skills deafblind can have, can communicate with anyone as long as they are patient. Just live like ordinary person.”
Usher Type II adult in 20s:
“I am hard of hearing with a vision problem because I still function normally with hearing aids, and being deaf is second nature to me as I have been deaf since birth. I am learning about the aspects of blindness and my vision loss is not severe enough that I consider myself blind. I am mobile without the cane and am able to be in social situations without much assistance from others unless the situation is in a dimly lit or dark setting. I do not feel that I entirely fit within the blind community yet, as I do not have all the experiences that blind people experience yet. Although I do feel that with time, I will be considering myself to be deafblind.”
Usher Type II adult in 30s:
“I identify myself as deafblind because it helps with people being aware of my needs. If I say deaf legally blind, people will assume I can see well than I really can. And, same thing if I say hard of hearing blind or legally blind; people tend to believe I am "hearing". I am an expert lip reader and fluent in ASL and have a very clear voice, so many times when people meet me, they do not know that I am deaf. They think I am hearing. Same for my vision even though I use a cane in crowded places (e.g., NYC). I have learned to scan a room out and make myself aware of my surroundings. People don't realize that I am legally blind.”
Usher Type II adult in 50s:
“I am deafblind. I am actually hard of hearing, not totally deaf. My vision is restricted with very narrow tunnel vision and fuzzy acuity in the central vision. In my youth, my vision was very good and my hearing was mild to profound and with my great lipreading ability I got by okay and I considered myself just hard of hearing. Now that my vision is worse and my lipreading ability is greatly compromised I have to use my hearing as long as I have powerful hearing aids on (my hearing is now moderate to profound). Without a good hearing aid system, I cannot comprehend (carry conversation) unless I try to lipread in which is next to almost impossible to do anymore. I have essentially become deafblind. I cannot see to "hear" through lipreading. Thus I am deafblind because of the additional hearing loss that promotes dual-sensory compromises.”
Usher Type III adult:
“I am Deaf-Blind. The reason I identify with this group is because it is more inclusive. So many persons who are Deaf-Blind are left out of the communities they used to belong to, whether it was Deaf Community, Hard of Hearing, Blind or Visually-Impaired, or hearing community, or feel left out of their own family. I am a person who acquired Deaf-Blindness due to Ushers Syndrome. Where I live all persons are welcome into the Deaf-Blind Community. So, where there was once the feeling of not fitting in any where, there is now a feeling of belonging and tolerance. We may all communicate in a different way, but with the help of Interveners/Interpreters we can now communicate with each other. In Canada where I am from an Intervener is the person who acts as the eyes and the ears of a person who is Deaf-Blind. When I attend other functions I often feel left out at times. The only other time I feel part of society is when I am with really good friends that I am fortunate to have. I believe Deaf-Blind community is multi-cultural much like Canada and USA is multi cultural and all people are welcome. And we learn from each other.”
Retrolental Fibroplasia/Meniere’s Disease adult:
“I am blind with a hearing problem. I have rlf (rop) and Meniere's disease. My hearing is extremely variable at this point, ranging from a 20 dB loss one day to an 85 dB loss the next or even during the same day. This is usually but not always a bilateral loss. I am congenitally totally blind. My hearing is extremely variable and because I do not have to deal with a severe hearing loss on a daily basis, as yet I perceive myself as blind with a hearing problem. The nature of Meniere's is such that there is a chance I will lose all hearing at some point but that is somewhere down the road (I hope) and I am in a bit of denial about the whole thing as I do not see myself as being what might be called a very well adjusted and efficient deaf/blind person. I am an audiologist and speech-language pathologist as well as a piano tuner. I play guitar and the loss of my hearing would cause me to lose all of that.”
Norrie’s Syndrome adult:
“I am blind with a hearing loss. I am totally blind and have been so virtually all of my life. I realized I have a severe hearing loss at about age 40 and started wearing aids at that time. I have always relied on my hearing to accomplish many things that otherwise might have required sight, so loosing hearing has been extremely difficult for me while a vision loss is more of a natural way of being for me. I can hear quite well in one-on-one conversations but do have serious problems in noisy and/or party-type situations, but as I can still hear and travel relatively independently, I cannot consider myself deaf-blind.”
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