Convention 2013Partnership in Ministry: 2 by 2

Disability Awareness

by Leanne Murrillo, CTRS

& Pat Huls, Deacon

Program Group on Disability Concerns

Resolution – Inclusion of person with disabilities

Program Group on Disability Concerns

Vision Statement  • The universal call to holiness leads us to

recognize that the Body of Christ is not whole when some members are not invited to full participation; therefore we envision that every person with disabilities will experience full inclusion in the parishes, missions, church properties and programs of the Episcopal Diocese of Arizona

ABIL’s 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.

Learning Objectives for Today

I. Identify and list several disability stereotypesII. 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 various disabilities and understand basic

etiquette, access and accommodations for that group

VI. Define Independent Living Philosophy

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 dwell

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.

Civil Rights Laws (cont)

• 1990—Americans with Disabilities Act (ADA): 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.

Reality Today

• With this progress, people with disabilities still face significant challenges and barriers.– Affordable Accessible Housing– Access to medical care– Transportation– Employment

• Higher rate of unemployment than the general population

Reality Today (cont)

• Disability cuts across all ages, ethnicities, economic status, races, geography, urban/rural, spiritual beliefs.

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

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.

• 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 limitation is a difficulty encountered by an individual in executing a task or action; while 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

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 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 is 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.

Aging and Disability

• By 2020, 26% of Arizonans will be over the age of 60. That figure stood at 17 % in 2000.

• In the decade leading up to 2005, the number of Arizonans over age 85 increased 82 %, more than any other age group.– As the population lives longer, more people

will experience a chronic illness or disabling condition.

Source: Aging 2020, Arizona’s Plan for an Aging Population

Aging and Disability (cont)

• Common disabling conditions that affect this group are: – Arthritis- Osteoarthritis “wear and tear” arthritis is the

most common kind.– Cancer- a large proportion of cancers happen more

commonly in the aging population.– Dementia- about 10 % of people over the age of sixty-

five have some form of dementia, and the proportion increases with age.

• Alzheimer’s Disease (AD)- most common type of dementia. At this time, no single cause of AD is known.

Aging and Disability (cont)

– Depression- affects fifteen percent of older Americans, and twenty-two percent of those eight-five or older.

– Stroke- is the number three cause of death in the United States and is the leading cause of serious, long-term disability. Among people over the age fifty-five, the incidence of stroke more than doubles with each additional decade of life.

Reflection

• As Christians 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 services NOT 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.

General Disability Etiquette

• Appreciate and emphasize what the person can do.

• Don’t discourage children from asking questions about disabilities. Children have a natural curiosity that needs to be satisfied so they do not develop fearful or misleading attitudes.

• Offer your help if you think it is needed, but don’t be surprised or offended if the person would rather do it themselves. If you are uncertain how to assist, ask! ALWAYS ASK FIRST!

Persons using Wheelchairs Etiquette

• Don’t hang or lean on the wheelchair unless you have the person’s permission.

Speak directly to the person and if the conversation lasts more than a few minutes, sit down or kneel to get yourself on the same level as the person in the wheelchair.

Wheelchair use provides freedom. Don’t assume that using a wheelchair is in itself a tragedy.

When a person transfers out of the wheelchair to a chair, toilet, car or other object, do not move the wheelchair out of reaching distance.

Wheelchair users are not necessarily “sick”. Some chair users can walk short distances, the chair helps them

conserve energy.

Persons using Wheelchairs Providing Access- Accommodations

• Automatic door openers• Level entrance/elevator• Adjustable tables• Various types of adaptive computer equipment• Voice recognition software • Personal Assistance Services – Home and

Community Based Services – Attendant Services

Speech Disabilities

• Possible causes:– Traumatic brain injury, genetics or other

neurological issues such as: cerebral palsy or muscular disability.

Examples

• Stuttering

• Aphasia

Speech Disabilities Etiquette

• Be patient. Do not try to finish the person’s sentences. Wait for the information.

• Ask person to say it again if you cannot understand what they are saying.

• If you don’t understand, don’t pretend you do.• Paraphrase to make sure you understood. • Ask the person what is the best way to communicate.

(i.e. write or type their message, point to pictures or the alphabet)

Learning Disabilities

• Cognitive or Learning Disabilities are a particular state of function that begins in childhood and may be characterized by a limitation in both intelligence and adaptive skills.– Most common developmental disability

• They may have average to above average intelligence but have difficulty with adaptive skills (social or daily living/practical skills).

• May have difficulty with memory, processing information, organization, and social awareness.

• Often individuals encounter stigma and labels.

Learning Disabilities Etiquette

Keep your manner encouraging rather than correcting. Can be sensitive to tone of voice and being rushed. Treat adults as adults• Reading/writing

Offer to read if struggling Offer to jot down if struggling Offer to make copies

• Organizationally Small steps Write things down Repeat as needed

ASK what tools work best for them so they can succeed!

Autism

• Autism is a complex neurobiological disorder that interferes with normal development in language, social interaction and behavior.

• The technical term, autism spectrum disorders (ASDs), refers to a group of

developmental disorders that are usually first diagnosed in early childhood and include: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS) and Asperger’s syndrome. It also includes two rare disorders, Rett disorder and childhood disintegrative disorder.

• Cause is still unknown but many believe it is caused by a combination of genetic and environmental factors.

Source: Southwest Autism Research & Resource Center, www.autismcenter.org

Autism (cont) • The person may struggle with typical social behavior or

social cues and may not make eye contact.• Thinking and learning abilities vary from gifted to

severely challenged. Associated problems include hyperactivity, self-injurious behavior, sleeplessness, eating disorders and gastrointestinal problems.

• Stability and consistently administered therapeutic interventions are critical to well-being.Source: Southwest Autism Research & Resource Center, www.autismcenter.org

Autism Etiquette

Speak calmly. Keep your manner encouraging rather than correcting.

• Avoid phrases that may have more than one meaning, sarcasm, slang.

• Small steps, no more than one or two at a time, repeat as needed.

• Write brief instructions if the person is able to read.

• Reduce distractions when possible. Bright lights and noise may be stressful for the individual.

• The person may repeat what you have said, repeat the same phrase over and over, talk about topics unrelated to the situation, or have an unusual or monotone voice. This is their attempt to communicate and is not meant to irritate you or be disrespectful.

Mental Health Disabilities

• Mental and Behavioral health covers a wide range of conditions, ranging from anxiety and depression to dementias and mental illness.

• It may be an emotional condition that the person is dealing with or a progressively debilitating disease such as Alzheimer’s Disease.

Mental Health Disabilities (cont)

• Anxiety- anxiety disorders include: Panic Disorders Obsessive-compulsive disorder (OCD) Post-traumatic stress disorder (PTSD) Social-phobia disorder (or social anxiety disorder) Specific phobias General anxiety disorder (GAD).

– Each anxiety disorder has different symptoms, but all the symptoms cluster around excessive fear and dread.

Mental Health Disabilities (cont)

• Depression- common, yet serious medical illness.

It effects thoughts, mental alertness, feelings,

and physical health. Major depression is the leading cause of

disability in the U.S. and Worldwide.

Mental Health Disabilities (cont)

• Bipolar Disorder- also known as manic depression, is an illness involving one or more episodes of serious mania and depression.

The illness causes a person’s mood to swing from excessively “high” and/or irritable to sad and hopeless, with periods of a normal mood in between.– More than 2 million Americans have bipolar disorder. – Biochemical imbalance, genetics believed to be a factor.

Source: Mental Health America, www.mentalhealthamerica.net

Mental Health Disabilities (cont)

• Schizophrenia- disorder which affects how a person thinks, feels and acts.

Someone with schizophrenia may have difficulty distinguishing between what is real and what is imaginary; may be unresponsive or withdrawn; and may have difficulty expressing typical emotions in social situations.– 2.5 million Americans have schizophrenia.– Symptoms usually appear between the ages 13-25. – Vast majority of people with schizophrenia are not violent and do

not pose a danger to others. – Biochemical imbalance, genetics believed to be a factor.

Source: Mental Health America, www.mentalhealthamerica.net

Mental Health Disabilities Etiquette

• Be respectful.

• Listen and pay attention- Pay attention both to verbal communication (words) and nonverbal communication (voice quality and body language).

• Acknowledge the person’s feelings and express care and concern “you seem nervous”, “you seem sad”.

Mental Health Disabilities Etiquette

• Validate the person’s feelings- Acknowledge that the person’s feelings are understandable, ie. “I can see how you might feel that way”. This is not the same as agreeing with the person’s reactions.

• Ask the person what may have caused the feelings.– Be careful about asking “Why?” It tends to lead to intellectual,

rationalizing, or defensive answers. Discuss how long the person has felt that way.

• Avoid giving advice- except in emergency situations.

• Do not use psychological terminology/jargon.

Mental Health Disabilities Etiquette

• Ask about social supports- family, friends, community, churches.

• Find out what helped them in the past.

• Remind them that they deserve to feel better and can feel better with treatment.

• Empower the individual- encourage them to think about their personal strengths, their individual gifts/talents, their value as a human being.

Brain InjuryBrain injuries are categorized by the cause of the injury.

• Traumatic brain injury (TBI) is an insult to the brain, not of a degenerative or congenital nature.

– TBI is caused by an external physical force that may produce a diminished or altered state of consciousness, and which results in an impairment of cognitive abilities or physical functioning. It can also result in the disturbance of behavioral or emotional functioning.

• Acquired brain injury (ABI) is an injury to the brain that is not hereditary, congenital or degenerative.

– Acquired brain injuries are caused by some medical conditions, including strokes, encephalitis, aneurysms, anoxia (lack of oxygen during surgery, drug overdose, or near drowning), metabolic disorders, meningitis, or brain tumors.

Source: Brain Injury Alliance of Arizona, www.biaaz.org

Brain Injuries (cont)

• A Brain Injury can affect your ability to: – Think and solve problems,– Move your body and speak, or – Control your behavior, emotions, and reactions.

Source: Brain Injury Alliance of Arizona, www.biaaz.org

• Every individual with a Brain Injury is different.– You have to observe, learn, and ask the individual how their Brain Injury

affects them.– Etiquette for people in wheelchairs, people with speech difficulties,

etiquette for people with learning disabilities, or etiquette for emotional disabilities may all apply based on how that particular individual is affected by their brain injury.

Deafness and Hard of Hearing(not the same)

• 28 million people in the U.S. have hearing loss. Most prevalent chronic disability in U.S.

• 2.4 million have severe to profound hearing loss.

• Deafness means an extreme inability to discriminate conversational speech through the ear. – Majority of population is currently late-deafened.

• Those with a lesser degree of hearing loss are called hard of hearing.

Deafness and Hard of Hearing (cont)

Categories:• Late-deafened• Born Deaf within Deaf family• Older adults with hearing loss• Hard of hearing• Deaf-blind• Deaf people who use neither ASL nor written English• Deaf people who use speech reading/ lip reading• Oral Deaf - have speech

Deafness and Hard of Hearing (cont)

Communication Aids:• Hearing aids• Sign language• Lip-reading • TDD or TTY (telecommunication devices for the deaf).• Relay Service in AZ: Dial 711• Cochlear Implants – surgical procedure• Internet including video phone and Interpreters via the

internet.

Deafness and Hard of Hearing (cont)

Etiquette• Hearing aids increase volume,

not necessarily clarity. • Change the words around or

say it another way.• Get the person’s attention with

a wave of the hand, or a tap on the shoulder.

• Speak clearly and slowly, but without exaggerating your lip movements or shouting. If difficulty persists, write down what you are saying.

• Ask if they read lips. Place yourself facing the light source and keep hands, cigarettes and food away from your mouth when talking.

• When an interpreter accompanies a person, direct your remarks to the person rather than to the interpreter.

Blindness & Vision Loss

• Everyone is unique. You may or may not recognize a person who is sight-impaired. – May have some vision or complete loss of sight– Blind from birth or late-blind– Deaf Blind – more common later in life– Majority today are late sight impaired due to illness,

accidents, or injury to head– Age-related Macular Degeneration is the leading

cause of vision loss in those over 60 years of age

Blind and Vision Loss (cont)

Providing access - Accommodations• Alternative formats for written materials:

– Large Print, Braille, CD, Audio tape• Large print signage & Braille signage • Remove physical barriers in path of travel• Will use a white cane or service dog

Blind and Vision Loss (cont). Etiquette

• Do not grab a person’s cane or arm. If you are walking with a person who is blind, offer your arm for them to hold. Describe where you’re going.

• Not all visually-impaired people read Braille. Ask the person what alternative format they prefer.

• When meeting or speaking with someone who is sight-impaired, always identify yourself before speaking. Call them by name.

• Do not be embarrassed if you happen to use accepted common phrases such as “see you later,” “look,” or “see.”

• Do not pet a guide dog when working! They need to concentrate.

Multiple Chemical Sensitivities

• Immune and nervous sensitivity to fragrances and other chemical products.

• Can be triggered by smoke, pesticides, perfume, animal dander, paint, new carpet, mold etc.

• Symptoms can vary from irritating or impairing to severely disabling or life-threatening: Asthma/ breathing problems, headaches/ migraine, nausea, dizziness etc.

Multiple Chemical Sensitivities (cont) Etiquette

• Avoid placing the person in rooms with recent pesticide sprays, strong scented products like disinfectants (bathroom scent emitters, cleaners, new paint or carpet, or other recent remodeling.

• Allow the person to wear a mask

or respirator, use an air filter, or open a window as needed.

Beware that "natural" or "unscented" does not necessarily mean they are safe. "Natural" can mean anything - it is an unregulated word and "unscented" may mean the product contains an additional (toxic) masking fragrance to cover other odors.

• Don’t wear perfumes and scented products to events that are “fragrance-free.”

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.

• 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!

Resources

• 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

Questions?

Thank you for attending the Disability Awareness presentation.

Leanne Murrillo, CTRS

602-296-0535 or leannem@abil.org

Pat Huls, Deacon

480-980-1868 or dnphrog@cox.net