Stigma, Embarrassment and the Use of Mobility Aids

The author’s vision deteriorated from the age of eight resulting from dominant optic atrophy. Consequently, aged in the mid 40’s cane training occurred and recently in the mid 50’s, dog guide training. In both cases the author was ambivalent to mobility training mainly due to losing anonymity. The author went through a process of confronting her own negative opinions about conspicuous mobility aids. When the author first started using the cane, she loved and hated it and named it “the crab,” a shiny thing that moved from side to side and nipped pedestrians on the heels. She did not like the way it altered her arm swing and felt self-conscious. That experience taught her to encourage people to voice their emotions. For example, to express what they fear most about losing vision and what they fear most about using the white cane as well as discussing the process of acquiring cane skills and the dignity moving around with a cane brings.

The majority of the author’s clients are over the age of 70 years and are losing vision later in life. Hence, any stigma associated with disability is often entrenched in the client and creates resistance to adopting mobility aids such as the white cane. Using a cane is sometimes the most appropriate option for people who are 80 + years with glaucoma. However, clients in this age group have often declined to use the cane after training and risk injury for example, a broken hip. Some clients resist using a cane even though they describe embarrassing situations like walking into mirrors or talking to shop mannequins. Further, because they cannot see faces, some people who are unaware of their vision impairment view them as ‘snobs’ or rude.

As another example, a young client of the authors was diagnosed with clinical anxiety and severe hyper myopia. He resisted using the cane and said he would prefer to take the risk of injuring himself. He agreed to use the Navigon GPS app on the iPhone and is trialling a monocular. After several “travel safe” sessions where he was encouraged to walk slowly, scan, and use his hearing more effectively, he was shown a black cane but remained definite that he would not use a cane. His main fear was he would “look like a freak.”

Fears and prejudices often exclude a person with a physical disability from being accepted into a mainstream culture (Becker, 1991). Even cultural norms such as basic manners are affected when a person loses vision, for example, people learn to share the pavement and move with other pedestrians but the cane is a signal to ‘get out of the way’. To participate in society we are taught to conform, to be part of the herd. The cane is white and shiny and the user stands out in a crowd. This ‘white cane spotlight’ might deter people from using mobility aids such as the cane.

People with deteriorating vision find creative and sometimes dangerous ways to “fit in”. They can avoid using the cane by: (i) following other pedestrians across the street; (ii) walking more slowly; (iii) using another person for assistance; (iv) relying on young children for guidance; and (v) developing and relying on other senses.

It appears that many clients do not want to stand out with a cane. When the author asks clients “what frightens you the most?” the answers include feeling vulnerable, embarrassed, looking different, and being conspicuous. Many of the author’s younger clients with retinitis pigmentosa comment that starting white cane training ‘hurts’ because it is accepting that they have little sight left. At the commencement of training, the author has observed that clients usually do not want to hear too much enthusiasm about the cane. Rather, clients want to simply learn of the cane’s functionality as a tool, for example, that it serves like an antenna and feels the ground and you can fold it and put it away.

People with vision loss might benefit from working through their self-consciousness or embarrassment. In the initial interview the author listens to the client’s stories and often asks: (i) what is your biggest challenge or what frightens you the most? (ii) would you be embarrassed using the white cane at home by yourself? (iii) what is the worst thing that could happen when using the white cane in public? (iv) how many “close calls” or “near misses” have you had?

Responses to these questions often bring forward emotions such as anger, laughter, and sadness. By answering these questions, clients give the author an authentic place to start working with them. For clients, answering these questions seem to assist the development of mutual trust and gives them a perspective to their fears and resistance.

The author has observed that clients are more likely to use a cane if taught in conjunction with assertiveness training. The author often refers to the book Facing the crowd (Fullwood & Cronin, 1986) that details simple yet effective ways to be assertive. The book is designed for parents of children with low vision but can be adapted to use any age.

Appropriate assertiveness training builds confidence and provides clients with a repertoire of coping strategies. For example, clients need to feel comfortable saying ‘no’ to well-meaning offers of assistance. In addition, clients need to learn appropriate ways to request help. A client who benefited from assertiveness training holds a management position and has retinitis pigmentosa. His peripheral vision is narrowing and his night vision has reduced significantly in the last year. What frightened this client the most was the thought of becoming dependent on others and making a fool of himself. His concerns were also about the loss of anonymity by using the cane and the need to frequently explain the enigma of his condition such as being able to read small print but needing to use a cane. The two hints related to assertiveness the client found most helpful was finding out about the “meet and greet” services offered by airlines at the airport, and identifying when he believed it was appropriate to ask for assistance. He also began slowly making changes at work, and read some autobiographies written by people losing their vision for ideas, differing perspectives, and motivation.

When discussing mobility aids the author explained how they provide dignity by enabling a person to move about independently. His feedback on the second occasion was that being able to move about with dignity gave him hope. The client explained that his main personal challenge was his “change of identity”. He was prepared to learn cane techniques but wanted to defer using the cane until he “absolutely had to.”

Although the author has observed client resistance to using the cane, research is needed to provide additional insight into reasons why some people do not use O&M skills after training, and useful approaches to assist resistant clients use mobility aids. Further, research investigating the methods and effects of assertiveness training might also benefit clients who resist using mobility aids.