Arizona Bridge to Independent Living

Where Are We on Disability Justice and Why it Matters!

Amina Donna KruckVP Advocacy Programs602-443-0722 – office602-980-1155 – cell

aminak@abil.org

About ABIL’sOur Mission:

ABIL offers and promotes programs designed to empower people with

disabilities to take personal responsibility so that they may achieve or continue

independent lifestyles within the community.

Disability Empowerment Center of AZThe Partner Organizations

• Arizona Autism United• Arizona Bridge to Independent Living (ABIL)• Arizona Center for Disability Law• Arizona Spinal Cord Injury Association• Brain Injury Association of Arizona• Joni & Friends• NAMI – National Alliance for the Mentally Ill• National MS Society - AZ Chapter of • Raising Special Kids• Statewide Independent Living Council• Symbius Medical• Valley Center of the Deaf

Plus Major Conference Space for Hosting National, Regional, & Local Events

ABIL Programs• Advocacy / ADA Services• Independent Living Skills

Instruction • Information & Referral • Peer Support• ABIL Employment Services• Early Intervention to People

Newly Disabled • Empowering Youth in

Transition

• Living Well w/a Disability• Personal Assistance Services• Reintegration from Nursing

Homes• Self Advocacy and Self

Determination Skill Training• Socialization Through

Recreation • Virginia G. Piper Sports and

Fitness Center

• Home Modification

Learning Objectives for TodayI. Define Independent Living PhilosophyII. Recognize how legislation, culture, and aging

shape the disability experienceIII. Identify at least two barriers for people with

disabilities todayIV. Define People First Language and use two

examplesV. Identify two civil rights laws that apply to

Arizonans with disabilities.

Centers for Independent Living• 400 Centers for Independent Living nationwide

www.virtualcil.net

• The term “center for independent living” means a consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agency that…• is designed and operated within a local community

by individuals with disabilities; and• provides an array of independent living services.

What is the Independent Living Philosophy?

• The foundation of our programs and how we work with our consumers.

• We believe disability is a natural part of the human experience and in no way diminishes the right of individuals to live independently.

Independent Living Philosophy (cont.)

• We believe that the opportunity to fully participate in the political, economic, and social life of our own community is a basic human right. The existence of a disability which inhibits personal function is not, in itself, a reason to deny those rights.

History of Independent Living

Civil Rights• The history of Independent Living is closely tied

to the civil rights struggles of the 1950s and 1960s among African-Americans.

History of Independent Living (cont.)

• People with disabilities were inspired to advocate.

• Basic issues: • Disgraceful treatment based on bigotry and negative

stereotypes • Discrimination and segregation in housing, education,

transportation, and employment• Lack of opportunities for people with disabilities to participate

in society

Centers for Independent Living

The Rehabilitation Act of 1973, as Amended Title VII Part C, funds over 400 CILs so that people with disabilities

can:

Live independentlyExercise self-determination

Make choicesContribute to society

Pursue meaningful careersEnjoy full inclusion and integration in the economic,

political, social, and educational mainstream of American society.

Ed Roberts• The "father of independent living". He was diagnosed with polio at 14.

• Eventually, he attended the University of California at Berkeley. Had to live in the campus hospital and use attendant services.

• In 1970, Ed and other students with disabilities founded a disabled students' program called the "Rolling Quads." This group focused on the need for access beyond the university.

• In 1972, Ed and other disability advocates started the first center for independent living in Berkeley.

• In 1983, Ed co-founded the World Institute on Disability (WID), an advocacy and research center promoting the rights of people with disabilities around the world. Ed Roberts died unexpectedly on March 14, 1995.

IL ParadigmMEDICAL

MODELINDEPENDENT

LIVING

Definition of problem

Physical/Mental impairment

Dependence on others

Focus of problemIndividual needs to be “fixed”

Environment

SolutionProfessional intervention

Barrier removal, advocacy, self-help

Who controls Professional “Consumer”

Social Role“Patient” or “Client”

“Consumer” or “User of services”

ABIL’s Tag Line

Advocacy and Programs

by and for

People with disabilities

Unofficial Motto:

Nothing About us Without Us!

Reality Today • Disability cuts across age, ethnicity, race,

gender, sexual orientation, economic status, geography, urban/rural, and spiritual belief.

• Disability is an equal opportunity club – anyone, anytime can join!

Impact of Culture on View of Disability

• Disability can be viewed through a cultural lens. It is important to understand how cultural beliefs may or may not shape the view of disability.• In some cultures, there may be shame attached to having a

disability due to many reasons.• For example: the traditional beliefs that disability is caused

by witchcraft or that the individual, their immediate family, or their ancestors have committed a sin and the disability is a punishment for that sin.

• In other cultures, the birth of a child with a disability might be viewed as God’s trust in the ability of the parents.

Impact of Culture on View of Disability (cont.)

• In some cultures, there is a focus on the family unit. Family may be an important source of support and be involved in care of the loved one.

• Spiritual and holistic treatments may be valued over traditional medicine.

• Some types of disabilities are more prevalent• Native American communities have a high rate of

diabetes and related complications, such as amputations.

What barriers do you think people with disabilities still

have today?

How about…

•Transportation

•Housing

•Health

•Employment

•Stigma – every system still needing to be educated

What stereotypes have you heard or seen about people

with disabilities?

Negative Stereotypes• Group Brainstorming – Get Wild!

Ouch!

Creative Responses

Fighting Fear of Disability• Disability is not a measure of character.• Disability is not contagious. • Most people with disabilities want to promote

understanding. • People with disabilities would rather focus on

their strengths than their weaknesses. • If you have questions about a disability, ask --

within polite boundaries and if your question is relevant to the conversation.

What is Oppression?

• Economic/political system where vast majority of people work to produce wealth for a small minority who own and control the wealth. $$$$$$$$$– It causes disability– It stereotypes people with disabilities as less

or non-productive, and by its own terms dis-values and further dis-ables us.

How Oppression Works

• Every oppression relies on the psychological trick of separating one group from another by virtue of some real or imagined difference – then using the difference for an excuse for mistreatment.

• There is no “normal” everyone is different physically and mentally.

Results of Oppression

• Negative Stereotyping• Discrimination• Segregation• Institutionalization• Inadequate Incomes• Economic Exploitation• Environmental Barriers to Mobility• Control of our Lives by Others• Internalized Oppression

Results of Oppression• Discrimination• Segregation• Institutionalization• Inadequate incomes – Poverty!

– PWD 16-64: only 37% were employed (2005) that is 14M +– For 65+, 40.5% have 1 or more disabilities.– PWD 5yrs or over: 21% are below the poverty level (8M) compared

to 11% people with no disability. (2005)

• Economic Exploitation – sheltered workshops, low pay for care givers

• Environmental Barriers to Mobility

Results of Oppression • Control of our Lives by Others

– Less likely to vote– Less likely to run for office– More organizations for PWD than of PWD – Lack of political awareness

• Feeling unattractive – unlovable• Feeling we have no right to exist (the “B” word)• Lack of social skills

– Youth and employment – IEPs• Isolation from our allies

Control of our Lives by Others

Results of Oppression• Isolation and feeling left out

– We don’t show up!

• Diverseness among ourselves• Denial of our disabilities and others• Blaming the disability for everything that is

wrong• Compulsive cheerfulness• Compulsive misery

Internalized Oppression• Owning negative stereotypes as truth

– For ourselves

– For others with disabilities

• We need our internalized oppression interrupted!• Encouragement to act outside the oppression –

Be Bold!• Knowing your legal rights and speaking up about

them.

Civil Rights LawsCivil Rights Legislation began to provide more rights and

protections for people with disabilities• Architectural Barriers Act

(1968): prohibits architectural barriers in all federally owned or leased buildings.

• Urban Mass Transit Act (1970): requires that all new mass transit vehicles be equipped with wheelchair lifts.

• Rehabilitation Act (1973): particularly Title V, Sections 501, 503, and 504; prohibits discrimination in federal programs and services and all other programs or services receiving federal funding.

Progress !?!?!

Civil Rights Laws (cont.)• Education of all

Handicapped Children Act (PL 94-142) (1975): requires free, appropriate public education in the least restrictive environment possible for children with disabilities. This law is now called the Individuals with Disabilities Education Act (IDEA).

• Air Carrier Access Act (1988): prohibits discrimination on the basis of disability in air travel and provides for equal access to air transportation services.

• Fair Housing Amendments Act (1988): prohibits discrimination in housing against people with disabilities and families with children. Also provides for architectural accessibility of certain new housing units, renovation of existing units, and accessibility modifications at the renter’s expense.

Civil Rights Laws (cont.)• Americans with Disabilities Act (ADA) (1990):

provides comprehensive civil rights protection for people with disabilities; closely modeled after the Civil Rights Act and the Section 504 of Title V of the Rehabilitation Act and its regulations.

ADA Title I: Employment

• Title I requires employers with 15 or more employees to provide qualified individuals with disabilities an equal opportunity to benefit from the full range of employment-related opportunities available to others. For example, it prohibits discrimination in recruitment, hiring, promotions, training, pay, social activities, and other privileges of employment.

Title I: Employment cont.• It restricts questions that can be asked about an

applicant's disability before a job offer is made, and it requires that employers make reasonable accommodation to the known physical or mental limitations of otherwise qualified individuals with disabilities, unless it results in undue hardship. Religious entities with 15 or more employees are covered under title I.

ADA Title II: State & Local Government Activities

• Title II covers all activities of State and local governments regardless of the government entity's size or receipt of Federal funding. It requires that governments give people with disabilities an equal opportunity to benefit from all of their programs, services, and activities (e.g. public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings).

ADA Title II: State & Local Government Activities

• Title II covers all activities of State and local governments regardless of the government entity's size or receipt of Federal funding. It requires that governments give people with disabilities an equal opportunity to benefit from all of their programs, services, and activities (e.g. public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings).

ADA Title III: Public Accommodations

• Title III covers businesses and nonprofit service providers that are public accommodations, privately operated entities offering certain types of courses and examinations, privately operated transportation, and commercial facilities.

ADA Title III: Public Accommodations

• Public accommodations are private entities who own, lease, lease to, or operate facilities such as restaurants, retail stores, hotels, movie theaters, private schools, convention centers, doctors' offices, homeless shelters, transportation depots, zoos, funeral homes, day care centers, and recreation facilities including sports stadiums and fitness clubs. Transportation services provided by private entities are also covered by title III.

Reality Today• With this progress, people with disabilities still

face significant challenges and barriers.• Affordable, accessible Housing• Access to medical care• Transportation• Higher rate of unemployment than the general

population

Definition of Disability• A disability is an impairment that may be physical, cognitive,

mental, sensory, emotional, developmental, or some combination of these. A disability may be present from birth or occur during a person's lifetime.

• The majority of disabilities are “hidden disabilities”, that is a person cannot by identified as having a disability by simply looking at them.

Definition of Disability

• Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. – An impairment is a problem in the function of the body

or structure; – An activity or functional limitation is a difficulty

encountered by an individual in executing a task or action;

– A participation restriction is a problem experienced by an individual in involvement in life situations.

Disability Statistics Today

2010 Population in USA: 310 million• Population with Disabilities: 54.4 million

2009 Arizona population: 6.5 million• Arizonans with disabilities: 902,000

Source: US Census Bureau

• As professionals, we must be prepared to work with people with disabilities in a way that is empowering, respectful, and promotes their independence.

• The language and etiquette we use is critical.

People First Language

• Many people worry about how to talk to someone with a disability.

• People First Language reflects good manners, not “political correctness,” and it was started by individuals who did not want to be labeled.

People First Language (cont.)

• It helps us describe what a person has, not who a person is.

• Why is People First Language important?• A person’s self image is tied to the words used

about him or her.

A Few Examples of People First Language

• Children/adults with disabilities NOT Handicapped/the disabled/special needs

• He has a cognitive or intellectual disability NOT He's mentally retarded

• He has a physical disability NOT He's a quadriplegic/crippled

• She uses a wheelchair NOT She's confined to/ wheelchair bound/ wheelchair person

More Examples of People First Language

• He uses a power chair NOT Electric chair• He receives Special Ed servicesNOT He's in “special ed/

a special ed kid”• People without disabilities/non-disabled/ People who are not disabled NOT Normal or healthy

people• Congenital disability/Brain injury NOT Birth defect/

Brain damaged• Stroke survivor/Cancer survivor NOT Stroke/Cancer Victim• Accessible parking, hotel room, etc. NOT Handicapped

parking, hotel room, etc.

In Conclusion• Disability is a natural part of living. People with

disabilities are not stereotypes. They don’t want to be “special” or “courageous,” heroes or villains.

• Using People First Language helps us talk about what a person has, not assume that is who the person is. Diagnosis should not be a label. Diagnosis are only to get services.

• You have the power! Simple awareness and etiquette can help us be effective and empowering in our interactions with people with disabilities.

• If you are not sure how to help, just ask!

Referrals:•For further reading on disability history, check out the book No Pity by Joseph Shapiro.•For further reading on People First Language, visit www.disabilityisnatural.com•To find more about civil rights go to www.ada.gov•For accommodation expertise contact the Job Accommodation Network www.jan.gov •National Council on Independent Living www.ncil.org

ARIZONA BRIDGE TO INDEPENDENT LIVING

Phoenix: 5025 E. Washington St., Ste. 200 (602) 256-22451229 E. Washington St. (602) 296-0551

Glendale: 6829 N. 57th Ave. (602) 424-4100

Mesa:2150 S. Country Club Drive, Ste.10 (480) 655-9750

Website: www.abil.org