«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
In addition, society tends to tell blind children and adults that they cannot do certain things because they cannot see. For instance, Olympic long-distance runner Marla Runyon was once told she could not run track and especially not hurdle events, but 194 Welcoming Children she became very accomplished nonetheless. She describes her experiences in the book No Finish Line.4 Similarly, Erik Weihenmayer writes in Braille Monitor that he was told he would never be able to climb Mount Everest, but he did.5 Once he had accomplished this feat, however, some people believed that it was not his own skill but other people’s help that led him to the top. Ironically, when someone with blindness or visual impairment looks normal and gets around well, some people think he or she is faking blindness. Weihenmayer says people are always coming up in front of him and waving their hands in his face to determine if he can see.
When he flinches from the feel of the moving air on his face, they think he can see.
People who are deaf and blind have to cope with a double dose of prejudice and misconception. The story of Helen Keller has been made famous by several movies, countless books, and her own writings. Blind and deaf from the age of two, Keller went on to graduate from Radcliffe College and become a noted lecturer, writer, social activist, and advocate for blind and deaf people. Her achievements helped dispel the notion that people who were blind or deaf and blind could not enjoy full lives.
According to Laurie Lawlor in her book Helen Keller, Keller did not consider herself gifted but saw blindness and deafness as parts of who she was, like character traits.6 From this understanding, she developed a wonderful spiritual vision of the sacredness and oneness of all life. She learned to live in harmony with herself and the world through determination and a clear sense of her own identity, and people felt graced by her presence.
Ministering to Families Except for their vision impairment, children who are blind or visually impaired are just like other children: They vary in ability and personality; they need love and affirmation; and they like to run, play, and socialize with their friends. The primary difference between them and other children is that they learn about the world through senses other than sight, particularly through touch.
195 Blindness and Visual Impairments Having a child with blindness or visual impairment, however, changes the dynamics of the family. The special needs of the child may consume the parents’ time and attention, perhaps to the exclusion of the other children. The parents may need to learn how to interact with a baby who cannot see or prepare the home to accommodate the special needs of such a child. The parents may also become frustrated or confused as they face the many misconceptions held by professionals, family members, friends, and strangers about children with blindness or visual impairments.
While the special needs of the child with visual impairment will require more time and attention, they should not become the sole focus of the family and its activities. The parents will need to model how the family should interact with the child with blindness or visual impairment, balancing everyone’s need for love, independence, and individual attention. The other children in the family will need to learn how to cope with the negative and sometimes hurtful reactions other people may have about their sibling.
Like their parents, they may become effective advocates for their brother or sister.
Children with visual impairment or blindness will encounter many obstacles in life, which may undermine their self-esteem.
For instance, grade school children may be excluded from games and activities by people who assume they cannot safely participate.
Similarly, a teenage youth may feel left out when he or she cannot obtain a driver’s license, like everyone else.
Just like the man described earlier in the chapter, children and youth will also encounter people who think blindness is a terrible tragedy. In Children with Visual Impairments, Cay M. Holbrook presents this anecdote: “One horrified mother tells of an encounter at a party with an elderly gentleman who patted her fiveyear-old on the head and said, ‘Bless his poor heart. I just want to cry when I see children like him.’”7 Adjusting to the realities of blindness or visual impairment is a life-long process that constantly affects the individual’s selfesteem. When confronted with negativity or rejection, children may first experience shock and denial, followed by mourning 196 Welcoming Children and then withdrawal. Some may even become depressed. But usually, children soon tire of feeling down and want to get on with life. These stages can occur over and over again throughout life, however.
With good emotional support, coping activities, and realistic goal setting, children with blindness and visual impairments become more comfortable coping with the negatives they confront and grow stronger and build self-esteem. Runner Marla Runyon asserts that people’s doubting attitude only made her more determined to prove them wrong.
Children who are born with blindness and those who lose their sight will have vastly different experiences. Children born with this condition may become resentful or angry when they cannot do the same things in the same ways as their sighted friends, but they usually accept the fact that they have a visual impairment.
Children who somehow lose their vision, however, may go through years of denial.
Erik Weihenmayer, who lost his vision as a teenager, describes
his experiences in learning to accept being blind:
When I was thirteen, I became blind from a rare disease, retinoscheses. There were a few months of frustration when I wasn’t really sure what I’d be able to do, but something interesting happened. I didn’t want to accept blindness and accept myself as a blind person. I didn’t want to be identified as a blind person, but I found something interesting: when I actually accepted blindness—I didn’t try to transcend it or go beyond it or beat it but just accepted it—that was the greatest thing I could ever have done. I went off to a rehabilitation center where I learned how to use computers... and learned how to use a cane and learned Braille. I found that, when I was able to read a poem in Braille in front of my class or was able to walk down a hallway with a cane with my buddies, those things that I thought would separate me actually connected me back to the world. I started thinking, if I thought I 197 Blindness and Visual Impairments couldn’t read, but I can and if I thought I couldn’t be mobile, but I can, maybe there are other things that I can do that I didn’t think I could do, if I just approached it differently, if I thought about the idea that we can get to the top; we just have to do it a different way. So my Dad suggested that I go rock climbing. He said, “There is a program for blind kids going rock climbing.” I thought, “That sounds crazy,” so I signed up.8 Similarly, the parents who are just beginning to cope with the visual impairment or blindness of a newborn child will have different needs for ministry and support than the parents of an older child, regardless of how long that child has been blind or visually impaired. New parents will be focused on the immediate care of their baby and may not have much time to grieve or come to terms with the fact that their child has a disability.
Parents whose child becomes blind or visually impaired later in life will go through the same stages of grief as the parents whose baby is born with such a condition. The difference is that the older child will already have had a life of routines and activities that now must change. The same can be said of the other family members as well. Everyone will be affected and have to learn new ways of functioning. The dynamics of the whole family will change.
In focusing on helping their child, the parents may not confront their own feelings of loss. And at least initially, some may resent that they now have to help their child do things he or she could once do independently. Other parents may overcompensate and try to do everything for their child, leaving little room for his or her acceptance and independence.
Ideas for Teaching The children in the religious program should receive awareness training about blindness and visual impairment, regardless of whether they know the child in a context outside the church. The 198 Welcoming Children teachers in the program should also receive such training, as they will probably have some of the same fears, misconceptions, and misunderstanding as the children. Keep in mind that blindness is not a common condition, and discomfort is fueled by unfamiliarity.
If they are agreeable, involve both the parents and the child in planning the sensitivity training. Some children will prefer not to be present when the training occurs, and this decision should be respected. Others will feel comfortable talking about their blindness or visual impairment and want to help their peers understand them and their likes and dislikes. Make sure the children involved in the training have a chance to ask all the questions they have, as they will be genuinely curious.
Some of the following teaching ideas are adapted from All
God’s Children, by Gene Newman and Joni Eareckson Tada:9
• Be aware how to adapt each activity for the child with visual impairment or blindness.
• Remember that these children learn primarily through touch and hearing. Use concrete examples and incorporate or refer to as many of the other senses as possible.
• Be sure the child has an opportunity to feel what is going on.
For example, create a chalice and flame out of felt that can be symbolically lit during prayer or meditation. Let the child feel the felt pieces and explain what you and the other students are doing so he or she will always know what is happening.
• Make sure the child is aware of who is in the room. The gathering activity is a good time for everyone to say his or her name.
• A gentle touch on the child’s elbow is the best way to get his or her attention.
• Ask the child whether he or she wants assistance in walking— say, to the chapel or the lunchroom. If he or she wants assistance, do not grab his or her arm but instead offer your arm. The child 199 Blindness and Visual Impairments may want to walk a half step behind you in order to tell from the motion of your body when there are steps, turns, and so on. Also talk with the child’s parents to determine how much assistance he or she needs getting from one activity to another.
• Orient the child to the classroom, and try to maintain consistency in how it is arranged. Always inform the child if there are new objects in the room or if existing objects have been rearranged.
• A child who has developed competency with a cane or uses a guide dog will probably want to become familiar with the entire church environment. The other children should learn about how these aides work, perhaps as part of the awareness training.
• At snack time, always explain and show the child where the juice cup and food are placed. Be consistent every time with the placement.
• Most religious education does not require children to read, so providing braille reading materials will not usually be an issue.
However, if the child wants to read about a particular subject, you can record the information on tape or have it typed on a braille typewriter. The child’s parents will be the best resource on providing these materials.
• Both teachers and children need to avoid being too helpful and constantly doing things for the special-needs child without asking first. With each new activity, ask the child if he or she wants assistance. Be aware of those things the child can do independently, and let him or her do them without first offering to provide help.
• Create an environment in which all children learn from each other, appreciate each other’s gifts, and know that, despite appearances, they are more alike than different.
Deafness and Hardness of Hearing Deafness is about communication, not sound.
—Paul W. Ogden, The Silent Garden In order to minister to deaf and hard-of-hearing children, it is important to understand the issues related to deafness. Some members of what is referred to as the Deaf-World do not consider themselves to have an impairment but rather a mode of communication other than speech. To them, deafness is about communication. Other people who are deaf or hard of hearing do not see themselves as part of the Deaf-World and want to function only within the hearing community. There is continuing conflict between these two communities, and how deaf and hard-of-hearing children are raised and educated depends on which community their parents belong to.
Because members of the Deaf-World consider themselves a linguistic and cultural minority, they will probably not be attracted to a Unitarian Universalist church, unless a Deaf program is a primary ministry of that church. (Similarly, we wouldn’t expect someone who speaks only Spanish to attend a church that uses only English.) However, our congregations do include deaf and hard-of-hearing adults and children who do not identify primarily with the Deaf-World community.
200 201 Deafness and Hardness of Hearing
Description Deaf and hard-of-hearing people are very diverse in terms of the cause and degree of their hearing loss, the age of onset of their hearing loss, their educational background, their communication methods, and their feelings about their hearing loss. Despite these individual differences, the terms deaf and hard of hearing are generally preferred by the community of people with hearing loss.
And as explained in Deaf in America, by Carol Padden and Tom Humphries, the term deaf should be lowercase in some instances
and capitalized in others:
Following a convention proposed by James Woodward (1972), we use the lowercase deaf when referring to the audiological condition of not hearing, and the uppercase Deaf when referring to a particular group of deaf people who share a language—American Sign Language (ASL)—and a culture.1
Padden and Humphires also provide this description of the DeafWorld: