The Independent Living Philosophy and Disability Etiquette

1. The Independent Living Philosophyand Disability Etiquette

2. The IL Philosophy & Culture • founded in the belief that people with disabilities have a common history and a shared struggle and programs serving disabled people should be designed to serve all disability groups. • emphasizes consumer control; the idea that people with disabilities are the best experts on their own needs • each person is individual and unique • all people have the ability to contribute • people with disabilities are the most knowledgeable experts about their own needs and issues • all people deserve equal opportunity to decide how to live, work, and take part in the community

3. The Independent Living Program • Centers for Independent Living are: • community-based • cross-disability • non-profit • designed and operated by people with disabilities • unique in that they operate according to a strict philosophy of consumer control, wherein people with all types of disabilities directly govern and staff the organization.

4. Traditional Thought • disabilities are impairments to be cured • people with disabilities are incapable and undeserving of optimal and self-directed care • underestimation of the abilities and quality of life • In contrast…

5. …Independent Living Model • sees the problem differently • the problem lies in the environment, not the individual • though many people have physical, intellectual, or mental attributes that deviate from the “norm”, disability is manifested through physical, programmatic, and attitudinal barriers • ask only for the same human and civil rights enjoyed by others

6. The common goal is an opportunity for full participation in the cultural, social, economic and political aspects of our society.

7. Allowing and Encouraging Participant Direction/Choice • ILC goal is to help people with disabilities learn to help themselves, instead of doing so much for them. • When our participants are “calling the shots” they will experience “ownership” of the independent living process and will be motivated to work hard on achieving their goals. • The process of developing goals helps participants choose where they want to go in life. It also raises self-confidence and competency and helps maintain motivation. • Help them become interdependent citizens instead of dependent clients.

8. How to Help Participants With Their Independent Living Goals • Give direction to look at all possible alternatives • Encourage them to consider the pros and cons of each option • Allow the participant to make their own decision • Keep in mind… Offering advice/solutions implies you think you know more than your participant does about what is right. It also shows you are NOT listening, since advice is based on your experience, not your participant’s. There’s nothing wrong with having opinions. The danger comes when we use opinions, not facts, to make important decisions about another person’s life.

9. Disability Etiquette Tips • Use common sense and extend common courtesies to everyone. • Be patient. People with disabilities might require more time to express themselves. Listen attentively and wait for them to finish. Never pretend to understand. • Relax and be yourself (don’t worry about using common phrases like “see you later”). • Speak directly to the person and maintain eye contact (don’t speak through a companion, aide, or interpreter). Direct your conversation to the participant, even if the family/caregiver are in the room.

10. More Disability Etiquette Tips • Offer assistance and listen for response – follow any specific directions. Don’t assume you know how to help… ask if they want help and, if so, how you can help. • Always offer to shake hands when introduced. People with limited hand use or who wear artificial limbs can usually shake hands. (Shaking hands with your left hand is an acceptable greeting.) • Identify yourself and those with you when greeting someone who is blind or visually impaired.

11. A Few More Etiquette Tips… • Respect all assistive devices/service animals as personal property. Do not move, play with, or touch them unless given permission. • Place yourself at eye level when talking with a person using a wheelchair. This avoids “talking down” to the person and stiff necks. • Tap a person who’s deaf or hard of hearing on the shoulder; look directly at the person; show your face. • Don’t patronize (treat adults like adults).

12. Avoid these terms with negative/disempowering meanings: • crippled • able-bodied • defect • handicapped • invalid • normal • suffers from • victim • wheelchair-bound

13. Examples of People First Language Instead of Say • the handicapped or disabled • she’s learning disabled • he’s a quadriplegic/crippled • she’s wheelchair-bound or confined to a wheelchair • birth defect • brain damaged • handicapped parking • she has a problem with… • ? • ? • ? • ? • ? • ? • ? • ?

14. Examples of People First Language Instead of … Say … • the handicapped or disabled • she’s learning disabled • he’s a quadriplegic/crippled • she’s wheelchair-bound or confined to a wheelchair • birth defect • brain damaged • handicapped parking • she has a problem with… • people with disabilities • she has a learning disability • he has a physical disability • she uses a wheelchair • congenital disability • brain injury • accessible parking • she needs… or she uses…

15. Last… If you remember just one thing from today…People First • People First Language puts the person before the disability. • The disability community is the largest minority group in our nation, and it’s all inclusive. It includes people of both genders and of all ages, as well as people from all religions, ethnic backgrounds, and socioeconomic levels. • Above all else, people are people first.

16. Additional Resources www.disabilityisnatural.com www.ilru.org www.ncil.org