Multiple Views on Technology and Disability

1. Multiple Views on Technology and Disability Patti Bahr Gillette Lifetime Specialty Healthcare Joan Breslin Larson Minnesota Department of Education

2. Competencies are attitudes, knowledge, and skills that health professionals, including rehabilitation specialists, must possess in order to deliver high quality care (Coursey, 1998). Competencies are attributes of individual providers, though it is unlikely that a single provider will have all of those necessary to treat all persons (Hartman, Young & Forquer, 2000). Having a general understanding of particular populations, however, is the first step in achieving this goal. (http://cirrie.buffalo.edu/monographs/mexico.pdf)

3. Assistive Technology • Devices used by persons with disabilities to increase, maintain or support independence • The services to support the selection, acquisition or use of the devices.

4. Assistive technology can be • No or low tech (simple tools) • Mid tech (some electronics, but generally lower in cost) • High tech (includes high end technology such as computers and mobility devices)

5. Technology Access for Students Varies by Race • Teenagers who have access to home computers are 6 to 8 percentage points more likely to graduate from high school than teens who lack access to a home computer, after controlling for individual, parental, and family characteristics. • Only 50.6 percent of blacks and 48.7 percent of Latinos have access to home computers, compared with 74.6 percent of whites. • Only 40.5 percent of blacks and 38.1 percent of Latinos have internet access at home, compared with 67.3 percent of whites. • Asians have home-computer and internet-access rates that are slightly higher than white rates (77.7 and 70.3 percent, compared with 74.6 and 67.3 percent). • Among Latinos, Mexicans have the lowest home computer and internet access rates, followed by Central and South Americans. (http://www.econ.uconn.edu/fairlie.pdf)

6. Technology dedicated to unique cultural groups • Voice output computers • Limited alternate language algorithms • Is possible to program alternate pronunciations in most programs • Voice output devices • Digitized • Synthesized

7. Considerations for digitized • Any message, any language is possible as everything is recorded on the device • Messages are limited to those recorded on the device

8. Considerations for synthesized • A limitless range of spontaneous messages are possible. • There are a limited number of languages available. They are primarily limited to “romance” languages. • There are a limited number of companies that make devices with alternate languages.

9. Demonstration of range of devices.

11. Dominant culture view • Disability is a physical phenomenon • Disability is an individual phenomenon • Disability is a chronic illness/condition • Disability requires remediation/fixing

12. Another view • Disability is a spiritual phenomenon • Disability is a group phenomenon (e.g. the family or society are causal factors) • Disability is a time limited phenomenon • Disability must be accepted, which affects whether the family seeks intervention.

13. Assumptions for immigrant or minority groups • Generally a sense of shame regarding the person with a disability. • Will attempt to hide or cope at home with the issues with disability rather than ask for support. • People from visible minority groups have more limited access to services than does the general population.

14. Impacting factors • Impact of length of time in the country • Regional differences • Impact of education, income, employment, etc. • Religious belief

15. Anglo • You must be a “special person” • So brave, so noble, so innocent, so stupid • God knew what he was doing when he gave you this special child. • You will always need care. • Anglos are individualistic

16. Hmong • The disability was caused by the nab. • A sin of an ancestor has caused the disability. • A disability may- or may not- be viewed as a problem (epilepsy/Shamanism)

17. Treatment concerns • Typical Hmong treatment does not involve touching the body (certainly not internally) • A loss of limb/body part (including surgical procedures or removing bone marrow) will prohibit the person from being reincarnated • You have a set amount of blood to last a lifetime • Anglos depend too much on technology. • Items added to the body (botox injections, pacemakers) are concerns.

18. When addressing treatment • Hmong belong to clans and defer to elders, particularly men. • Folk medicine will frequently be used in conjunction with traditional medicine • Short term solutions rather than life long treatment

19. Hispanic • Social relationships important • Family with hierarchy of authority • Respeto, dignidad, confianza • Will use folk healers and clergy in addition to health providers

20. Russian • Alternative medicine (mud baths, massage) is used alone or in conjunction with traditional medicine. Homeopathic regimes are preferred. • It is typical that bad news be given to the family rather than the patient • New treatments and procedures are desirable

21. African American • Vast diversity in education, economic status, religious belief, urbanization, etc. • Despite this, Blackness is a common experience • Many African Americans rely on community supports, particularly the church in dealing with disabilities. • Perhaps a broader perceptions of developmental milestones than do educators.

22. Somali • Msp/St Paul has largest population of Somalis in US • Families could only bring the number of children with them they could afford. Many families never succeed in bringing the entire family to the US. • Most Somalis are Muslim • Family is the ultimate source of personal security and identity • Family honor and loyalty are paramount values

23. Whom are you from? (clan and family history) • Parents/grandparents are the center of the extended family. They are arbiters and mediators.

24. Native people • Over 500 tribal groups identified by US government • Enduring sense of pride in cultural heritage • Belief of interrelatedness of body and spirit • Reliance on extended community and kinship networks • Time is not linear as it is for Anglos

25. Many native people • Do not have words for disabilities • May assign names that describe condition • Typically will rely on folk remedies • May recognize the disability as being a gift of the gods

26. Recommendations for cultural competency • Ask about family names. Wives may not have the same name as husbands (Hmong and Anglo) • Ask open questions, let the respondent self select rather than you choosing respondent • Be aware that many individuals are hesitant to enter the system as they have a history of governmental abuse or may be illegals

27. Trying to communicate • Be aware that many cultures may say yes to indicate they are part of the conversation, but it does not indicate understanding or agreement. (Conversely, Russians will say “no” to indicate that they are part of the conversation.) • Acknowledge that you are aware that you don’t know much about their culture. Ask for patience and help. Communicate that you are trying to help. • Use an interpreter • Use a cultural broker

28. What languages are spoken/understood in your home? Usual diet,special times of year for diet changes Beliefs and practices including special events Is there anything that your culture will prohibit Experiences with health care in home country Do you need to ask me anything Do you use traditional healthcare Who else needs to be part of our discussion So that I might be aware of and respect you cultural beliefs:

29. Ultimately • Be aware that all these guidelines are not concrete, that individuals will vary.

30. Resources • http://cirrie.buffalo.edu/mseries.html#series • The Program for Multicultural Health at (734) 998-9800, or the UMHS Interpreter Services at (734) 936-7021. (University of Michigan Health System) • The Spirit Catches You and You Fall Down, Anne Fadiman • MN. Department of Education Cultural/Diversity Specialist, special education Elizabeth Watkins http://education.state.mn.us/mde/Learning_Support/Special_Education/Evaluation_Program_Planning_Supports/Cultural_Linguistic_Diversity/index.html