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Convention 2013
Partnership 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.
II.
III.
IV.
V.
VI.
Identify and list several disability stereotypes
Recognize how legislation, culture, and aging
shape the disability experience
Identify at least two barriers for people with
disabilities today
Define People First Language and use two
examples
Identify various disabilities and understand basic
etiquette, access and accommodations for that
group
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 sixtyfive 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
• Congenital disability/Brain injury
NOT
• Stroke survivor/Cancer survivor
NOT
• Accessible parking, hotel room, etc. NOT
Normal or healthy
people
Birth defect/
Brain damaged
Stroke/Cancer Victim
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 Injury
Brain 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 [email protected]
Pat Huls, Deacon
480-980-1868 or [email protected]