Understanding the Culture of Stuttering

Transcription

1 Understanding the Culture of Stuttering Improving Interactions with People who Stutter Michael Boyle, Ph.D. Oklahoma State University Derek Daniels, Ph.D. Wayne State University Charles Hughes, Ph.D. Eastern Kentucky University Anthony Buhr, Ph.D. University of Alabama ASHA Conference, 2014 Orlando, FL 1

2 Disclosure Statement: We have no relevant financial or nonfinancial relationships to any of the content in this presentation that would reflect a conflict of interest. 2

3 A few hypothetical scenarios 3

4 Topics to be Discussed 1. The importance of cultural competence in our interactions with individuals with disabilities (Dr. Boyle) 2. The culture of disability and how this is relevant for people who stutter (PWS) (Dr. Daniels) 3. Interactions that could be perceived as inappropriate by PWS (Dr. Hughes) 4. Recommendations for interactions with PWS (Dr. Buhr) blog/?p=350 4

5 Learner Outcomes: Participants will be able to 1. Explain the concept of disability culture as it relates to stuttering 2. Describe types of interactions that could be perceived as inappropriate by PWS 3. Summarize recommendations for interacting with PWS in a culturally sensitive manner 5

6 Definition of Culture a system of shared beliefs, values, customs, behaviors, and artifacts that the members of a society use to cope with their world and one another, and that are transmitted from generation to generation through learning (Bates & Plog, p. 4) Bates, D. G., & Plog, F. (1991). Human adaptive strategies. New York: McGraw-Hill. 6

7 ASHA Position Statement on Cultural Competence professional competence in providing speechlanguage-hearing and related services requires cultural competence Cultural competence involves understanding the unique combination of cultural variables that the professional and patient/client bring to interactions. These variables include, for example, age, ability, ethnicity, experience, gender, gender identity, linguistic background, national origin, race, religion, sexual orientation, and socioeconomic status American Speech-Language-Hearing Association. (2011). Cultural competence in professional service delivery [Position statement]. Available from 7

8 ASHA Position Statement on Cultural Competence It is imperative that ASHA members continually and critically assess their own level of cultural competence. (cultural humility) cultural humility may require an attitude shift in which speech-language pathologists and audiologists recognize what they do not know and seek to gain knowledge and experience with the relevant languages and cultures of the individuals ASHA (2011) 8

9 ASHA Position Statement on Cultural Competence A cultural mismatch within the clinical context may have an impact on perceptions and interactions, with critical implications in diagnostic and therapeutic decisions. ASHA (2011) 9

10 What is Often Missing from Clinical Training? Professionals in health-related fields tend to be more familiar with cultural competence as it relates to beliefs and values associated with age, gender, racial, ethnic, or religious backgrounds We believe that disability culture should be included and emphasized as a type of culture that can impact interactions and service delivery with people who stutter Eddey & Robey (2005). Considering the culture of disability in cultural competence education. Academic Medicine, 80,

11 What is Disability Culture? 11

12 Disability Culture People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity (Brown, 2002, p. 48). Brown S.E. (2002). What is disability culture? Disability Studies Quarterly, 22,

13 Disability Culture Disability Rights Movement (1960s) American Rehabilitation Act of 1973 American with Disabilities Act of 1990 wvum.org/index.php/blog/article/disability_rights_movement_a_hidden_history/ 13

14 Disability Culture There are multiple ways of being within a culture. The problem in assuming that there is one way to be in a culture encourages the misunderstanding that those who are different from perceived norms are missing something, that it is their doing, that they are locked out for a reason (McDermott & Varenne, 1995, p. 326). People with disabilities share common beliefs, values, interests, and experiences that may differ from people without disabilities hence, a culture. In any group, there is always intragroup variation. McDermott, R., & Varenne, H. (1995). Culture as disability. Anthropology & Education Quarterly, 26,

15 Is there a Culture of Stuttering? Collectively, people who stutter have shared beliefs, customs, and experiences related to communication. People who stutter have: Common histories of oppression and resilience Shared beliefs, values, behaviors and artifacts used to navigate a world that prioritizes fluency Art, literature, music, and other identity expressions Transmitted knowledge from one generation to another There are diverse ways of being within the community of people who stutter: Culture of avoidance and shame Culture of pride and empowerment We shouldn t assume that all people who stutter want the same thing (e.g., a desired outcome of fluency). 15

16 Examples of Stuttering Culture Conferences Support groups Bracelets Belief systems Experiences Websites and blogs T-shirts 16

17 Examples of Stuttering Culture "I stutter more because I do not want to live in (nor help create) a world that normalizes bodies and discriminates against those who do not fit in. I take pride in my stutter as a way of resisting communicative expectations that are supposed to make me feel ashamed and are supposed to silence me. Stuttering more and stuttering proudly turns the tables on all those people who assume that, given a choice, I would rather talk just like them. I wouldn't. These are our voices. Deal with it. -Josh Retrieved from 17

18 Inappropriate Interactions Implicit expectations in a communication exchange Mismatch between best of intentions and expectations of each person in the communication exchange. 18

19 Minimizing the Experience of Stuttering Statements that may be associated with this interaction: Yeah, but you don t stutter that much. Your stuttering is not that bad. Only addressing the surface. The assumption is that because someone doesn t stutter that much, they are not impacted in any other way, or their experience is not as important. This could lead some PWS feeling guilty for sharing their stuttering with others. 19

20 Unsolicited Observations Overly simplistic advice making recommendations without formally evaluating someone That person could really use some easy onsets I wish that person would receive some speech therapy Patronizing Just relax The classic slow down and take a breath line Minimizing the complexity of their experience 20

21 Unsolicited Observations Making statements assuming that stuttering would prevent an individual from communicating at all In regard to a person who stutters Well, I don t know if that person would pass a speech, language, hearing screening. PWS may internalize these comments and these statements which may limit their employment choices Feeling of inferiority may also emerge 21

22 Focusing All Attention on Speech Fluency Assuming that fluency is the ONLY thing important to someone who stutters. Not recognizing all aspects of good communication and only focusing on speech fluency A person who stutters may feel that stuttering is not acceptable. May be led to think, So when I stutter, I must not be doing a good job? 22

23 Client Preferences and Values 23

24 Be Careful about Assumptions Offering help can put a person in a position of presumed need, or in a handicapped role Disability is not synonymous with helplessness It is possible to accomplish tasks of daily living and be successful in life without becoming a fluent speaker 24

25 Interacting with People Who Stutter How should you interact with a person who stutters? Is there a standard that applies to all people who stutter? How do you interact with other individuals whom you consider to have a disability? 25

26 Interacting with People Who Stutter Do not react to the stuttering. Where do you usually look when you are interacting with a person? By responding to the stuttering, you may be helping him to form a self-identity as a stutterer. 26

27 Interacting with People Who Stutter Do not make assumptions about the person who stutters. The individual might not be thinking about stuttering. Stuttering might not even be a salient factor for the individual. Why do we make assumptions about people? Fundamental attribution error (e.g., Ross, 1977). Ross, L. (1977). The intuitive psychologist and his shortcomings: Distortions in the attribution process. Advances in experimental social psychology, 10,

28 Fundamental Attribution Error 28

29 Interacting with People Who Stutter Assume the person is unique. It might be easy to define individuals by their disability, but imagine who is underneath. If the person feels frustrated, it s not your problem. We all need the time space to solve our own problems. "There is no normal life that is free of pain. It's the very wrestling with our problems that can be the impetus for our growth. Fred Rogers The World According to Mister Rogers: Important Things to Remember (2003). 29

30 Interacting with People Who Stutter Read the person you are interacting with. When in doubt make eye contact. Wait for the person to finish speaking. Do aspects of self-identity come from social reactions to stuttering? 30

31 Interacting with People Who Stutter "Part of the problem with the word disabilities is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren't able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities. Fred Rogers The World According to Mister Rogers: Important Things to Remember (2003). 31

32 QUESTIONS?? COMMENTS?? Michael Boyle: Derek Daniels: Charles Hughes: Anthony Buhr: 32