By Mark Irwin – ISA Board Chair *
“Dr. Mark Irwin is the Board Chair of the International Stuttering Association, the umbrella organization for national stuttering self-help and support groups from throughout the world. He has also previously served as President of the Australian Speak Easy Association and continues as a member of its national council. He is a dentist in private practice in Adelaide, Australia.”
Stuttering is a legally defined disability in many countries of the world. Even so to call stuttering a disability can provoke a strong negative reaction in both SLP’s and people who stutter (PWS). Why would this be so?
Objections to describing stuttering as a disability involve one or more of the following arguments: 1. Disability is not the right word. 2. Some people who stutter do not choose/want to see themselves as disabled. 3. The label disability encourages the victim mentality. The International Stuttering Association, the umbrella organization for national self –help and support groups throughout the world, recently debated this question, confirming its recognition of stuttering as a disability. The rationale for this decision follows:
1. Is disability the right word? This issue relates to the episodic nature of stuttering, its situational specificity, differences in how its life impact is perceived by sufferers, as well to the fact it can be ameliorated by therapy. Consideration of this leads to the question is there another word that better describes stuttering? Traditionally there have been two other words associated with disability – impairment and handicap. The distinction between them has been described by American SLP’s Scott Yarus and Bob Quesal, among others, in the following manner: Impairment refers to the stuttered speech patterns, disability describes the communication difficulties, and handicap describes the impact the communication difficulties have on achieving life goals. With stuttering, of course, the extent of the communication difficulty can be more than just the observable speech. The communication difficulty is also affected by the speaker’s anticipation of, and/or reaction to, the stuttering behaviour. So disability can still exist in spite of only a minor observable impairment and minimal handicap. However these distinctions are obviously subtle and confusing. The same issue affects accurate descriptions of many other disorders besides stuttering. In 2001 the World Health Organization responded to this by re-evaluating its previous International Classification of Impairments, Disabilities, and Handicaps, in favour of a new framework known as the International Classification of Functioning, Disability and Health. Without going into a full description of the impact of this change, (see Yarus and Quesal, Journal of Communication Disorders 37, 2004 ) ,one obvious implication as seen by the change in title, is that the words impairment and handicap have been devalued leaving disability as the general descriptor. In addition to this it is necessary to consider the use of the word disability when applied to what is known as the “disability movement”. This movement is becoming very powerful as previously disadvantaged members of society seek attitudinal and legislative change. There is no question that some pws have been disadvantaged by their stuttering, (e.g. unable to obtain a job because of an inability to speak well under the stress of an interview), and need these matters to be brought to the attention of authorities. Again disability is the right word to describe stuttering if stuttering is to be supported by the disability movement.
2. Some pws do not choose/want to see themselves as disabled. Canadian SLP Ann Meltzer reported a survey in which she asked pws to comment on this question “Is stuttering a disability.” The majority responded negatively to this statement. As a result she argued that “whether a person is disabled by stuttering or wants to be recognized as having a disability/ being disabled, is an individual choice.” A response to this statement leads to a debate on the semantics of the previously discussed impairment, disability, handicap definitions. It could also be argued that the same people who are not happy to see themselves as having a disability are also not happy about seeing themselves as people who stutter. In other words there is a lot of shame, embarrassment and denial for pws. Dealing with this is the major role of self help groups, and of course is regarded by many as a foundation stone for successful therapy. As expressed on related matters by popular TV psychologist Dr. Phil McGraw, “you can’t change what you don’t acknowledge.”
3. Labelling stuttering a disability may encourage a victim mentality. This of course relates to the issue discussed above. But it goes further. That is because pws have a legally defined disability they may be entitled to concessions that encourage them to stay dysfluent. They may also fall into the trap of using their stuttering to receive sympathy and support they feel they would not otherwise get. In other words there is a disincentive for pws to seek therapy or respond positively to it. Most commentators would agree this is a possibility, but this position also assumes therapy could be effective for everyone who stutters. Clearly this is not the case. Many pws have had years of therapy and still remain relatively dysfluent. Another question raised here is “just how hard should one have to try to become fluent?” An analogy is to expect everyone who joins a golf club to keep on practicing until they can play like Tiger Woods. This is obviously an unrealistic position. Some may have the talent, capability and luck as well as access to the right coach to do very well, but most of these golfers are going to remain players of modest skill. Indeed this raises another question, : “What expectations should therapists have of their clients?” The ISA has also looked at this question and ratified a Bill of Rights and Responsibilities for People Who Stutter. The general concept is one of individual rights for the person who stutters. In other words some may choose to live with their stuttering while others may work at overcoming it –the path is for each individual to decide. But with either path the word disability remains. Stuttering can be seen as a disability to be lived with, or as a disability to be overcome.
|*||This is an invited article for the ASHA Leader magazine and was given the status of Guest Editorial.|