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HEALING THROUGH UNITY

November, 2002

A monthly newsletter dedicated to serving the principles of

physical and spiritual health envisioned in the Baha'i Teachings.

Volume 6, Issue #3

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Contents

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- "A Journey of Courage: From Disability to Spiritual Ability": a New Publication
- Deaf Blind Girl Jumps out of Plane to Raise Money for those Less Fortunate
- Persons who Have a Physical Disability
- Physical Disabilities
- Communication Guidelines When Communicating with a Hard of Hearing Person
- Communication Repair Strategies for Deaf/Hard of Hearing Individuals
- Typical Accommodations for Hearing Impaired Individuals
- Resources for Hearing Loss
- A Response to the Information about Emphysema
- Newsletter needs Assistance
- Question of the Month
- Website
- Purpose of Newsletter

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"A JOURNEY OF COURAGE: FROM DISABILITY

TO SPIRITUAL ABILITY": A NEW PUBLICATION

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Compiled by Linda Bishop, Beverley Davis, Frances Mezei and Shirlee Smith Foreword by Member of the Continental Board of Counsellor, Dr. David Smith and Auxiliary Board Member, Meim Smith

This book is a celebration of life, where disability becomes ability, where struggle becomes strength, and where the effort to fully participate in the building of all that is noble and good is rewarded with victory after victory. As such, it is destined to serve as a wonderful source of insight and comfort to individuals, families and health care providers alike, assisting all who read it to understand what it means to truly embrace, in unity, the diversity of humankind. The compilers of this publication, all of whom are intimately aware of the ways in which society perceives disability, celebrate, in their own lives, the freedom of the human spirit to express itself in service to humanity. This compilation is an example of their devotion to such freedom. Contains many revealing and empowering passages from the Bahá’í Sacred texts as well as touching excerpts from stories and biographies about the Holy family and others. Comes complete with guidelines for creating an accessible environment for those with physical disabilities.

5.5”X8.5”, 160 pages, Unity Arts Inc. - Nine Pines Publishing 
9-945 Middlefield Rd Toronto, ON Canada M1V 5E1
Tel: 416-609-9900 Fax: 416-609-9600
ORDER DESK: 1-800-465-3287
EMAIL: orders@bahaibooksonline.com
WEB: www.bahaibooksonline.com
Item No.: B6-290 Suggested Retail: $12.95 USD $16.95 CAD
(You can check your local Baha'i distributor for this book)

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DEAF BLIND GIRL JUMPS OUT OF PLANE TO

RAISE MONEY FOR THOSE LESS FORTUNATE

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Taken from the "Inspirational Point" of this website: http://www.goodnewsnetwork.org/, October 6, 2002. Prepared by Sense, U.K.

In an autumnal morning sky, Nicola Henderson, 17, jumped out of an airplane at 10,000 ft. and free fell at over 120 miles per hour for five thousand feet, harnessed to a professional parachute instructor, returning to earth to the cheers of those below.

What made this jump so outstanding is Nicola, a beautiful young lady with a charming personality, has Usher syndrome. Usher is a genetic condition causing deafness from birth and sight loss, leading to blindness, from late teens. But Nicola is determined not to let her disability ruin her life.

“I couldn’t wait to dive out of that plane. I love a challenge and wanted to show everyone that just because I have Usher it doesn’t mean I can’t have a life. I was a bit scared but when I jumped it was the most amazing feeling - now I can’t wait to do another one!” Her jump was intended as a fund raising effort for Sense, the United Kingdom’s leading charity for people who are both deaf and blind.

Nicola was diagnosed with Usher syndrome when she was 15 and initially felt scared and alone. “I felt no one understood the problems I faced. “Sense enabled me to meet other deaf blind people, which helped me come to terms with my deaf blindness. I wanted to take this opportunity to raise money for deaf blind people less fortunate than me and make people aware of this disability and organization.” Nicola’s October 7th jump raised £1,000 for Sense. 

“I would like to be a positive role model for other deaf blind people, showing them that they can’t let their disability rule their life and if there is something they want to do then they need to get out and do it! I have 10 GCSEs (academic honors), a part time job in Safeway, I love swimming and want to be a TV presenter - I won’t let anything stop me!” 

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BAHA'I QUOTE

"Baha'u'llah and the Master have both urged us repeatedly to disregard our own handicaps and lay our whole reliance upon God. He will come to our help if we only arise and become an active channel for God's grace." ( From a letter dated 31 March 1932 written on behalf of Shoghi Effendi to an individual believer, "The Power of Divine Assistance", pp.47-48)

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PERSONS WHO HAVE A PHYSICAL DISABILITY

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Prepared by Guelph-Wellington Barrier Free Education Committee, 59 Carden St., Guelph, ON N1H 3A1, Canada

WHAT YOU SHOULD KNOW...

The common perception of a person with a physical disability is someone in a wheelchair, but not all people who are considered to have a physical impairment use a wheelchair. Other individuals with physical disabilities are those with arthritis or an elderly person who requires a walker. A survivor of a stroke or someone with asthma may seem to walk quite well but might only be able to walk for a very short distance. The same holds true for those who experience some form of nerve damage to the neck, back, spine or legs.

Often these types of physical disabilities are commonly referred to as mobility difficulties. They are described as restricting a person's ability to move around, to perform manual tasks, or to participate in certain activities.

TIPS TO REMEMBER....

- Speak directly to the person, maintain eye contact. Consider sitting down if the person is using a wheelchair.
- A person with a physical disability is like anyone else in the fact that they prefer to be as independent as possible. Before you offer assistance ask for permission, your help may not be needed or wanted. 
- Be patient and considerate of anyone that may take extra time to get things done.
- If the person needs help placing bags in or on their wheelchair, ask where they want you to place the bags.
- When pushing a wheelchair, avoid abrupt stops, do not run - walk at a comfortable pace, do not handle wheelchairs roughly. If in doubt about how fast to push the wheelchair, ask the person using the wheelchair. 
- A person with a physical disability can probably hear quite well, therefore you don't have to raise your voice or talk more slowly than you would normally. Simply speak directly to the person; clearly and concisely. 

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PHYSICAL DISABILITIES

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Taken from "Working Together: An Employer's Resource for Workplace Accommodation", pp. 34-35, Human Resource Development Canada. 2000 

Accommodation needs for persons with physical disabilities will vary from person to person. Assistive devices such as page turners, speech recognition software, alternative keyboards, and mouth sticks are only a few of the many aids available. 

MOBILITY AND AGILITY

The ability to move and the speed and quality of movement can be affected by a number of conditions or disabilities. A partial list includes: amputation, heart conditions, cancer, cumulative trauma disorders (including carpal tunnel syndrome, bursitis and tendonitis), back impairments, multiple sclerosis, cerebral palsy, arthritis. The symptoms of impairment may fluctuate, and both mental health and physical mobility or agility may be involved. It is important to understand the condition causing the limitations, and discuss with your employee what accommodations and adaptations will be useful in accomplishing job duties.

Overall accessibility in your workplace (lighting, handrails, elevators, parking, etc) is important for an employee with a mobility or agility impairment.

OTHER CONSIDERATIONS FOR ACCOMMODATION MAY INCLUDE:

- flexible work schedules or reduced work hours; work from home,
- periodic rest breaks; self-paced workload,
- ergonomic principles including proper lifting, posture and use of
equipment,
- alternative computer and/or telephone access 
- appropriate desk and chair height with materials in easy reach, 
- assistive devices such as arm support, page turner, book holder, writing and grip aids, foot rests,
- note takers.

Obstacles may be encountered for someone using a wheelchair in their workstation area, or in travelling into the work site. An accessibility audit will uncover what can be changed or adjusted such as table heights, parking space placement, etc. Some people who use wheelchairs will require assistance with personal care while at work. As an employer, you are not responsible to provide this personal care assistance, but you may be required to make an accommodation related to personal care needs while at work. Some examples of accommodations related to personal care are: personal attendant present to assist person with toileting, eating, grooming; rest breaks for repositioning, grooming; flexible scheduling and use of sick leave for medical care.

EXAMPLES OF WORK ACCOMMODATIONS:

- A journalist with carpal tunnel syndrome was limited to two hours of typing/writing daily. The employer purchased a digital tape recorder, writing aids, alternative keyboard, speech recognition software, and allowed frequent rest breaks during the work period.

- A secretary with rheumatoid arthritis was limited in typing because of pain and stiffness in her hands during cold weather. She was provided with a space heater, additional window insulation and speech recognition software. 
- A professor with a back impairment needed accommodations in her work area. She was provided with a file carousel, adjustable stool, automatic stapler, adjustable workstation and ergonomic chair.
- A maintenance worker with rotator cuff syndrome affecting shoulder and arm movement had difficulty reaching cleaning areas and moving cleaning supplies. The employer replaced existing tools with long-handled, pneumatic and lightweight tools, and provided the employee with an electric cart.

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COMMUNICATION GUIDELINES WHEN COMMUNICATING

TO A HARD OF HEARING PERSON

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Loss and loneliness can come together to the hard of hearing person. Too often they begin to feel isolated. Too often others stop talking to them or feel embarrassed with them, simply because they don't know how to 'get through.' Hearing loss is an 'invisible disability' and it is important to try not to ignore the hard of hearing person.

1. Get the person's attention before you speak.
2. Do not put obstacles in front of your face. Refrain from chewing gum or pencils and from covering your mouth with your hand or microphone.
3. Speak clearly and at a moderate pace.
4. Use appropriate facial expressions and body language.
5. If you are not understood, repeat or rephrase the sentence. Hard of hearing people often hesitate to ask, so be alert to help them when they miss something. 
6. Make sure your face is not in the shadow and that there is sufficient lighting. 
7. Avoid shouting which is embarrassing and unnecessary. 
8. In conversation, give the person key words or phrases. "Mary was saying that..." Lipreading is easier when the hard of hearing person knows the subject.
9. Avoid noisy background situations.
10. Be patient, positive and relaxed.
11. Talk to the hard of hearing person, not about him or her.
12. When in doubt ask the hard of hearing person for suggestions on how to improve communication.

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COMMUNICATION REPAIR STRATEGIES FOR

DEAF/HARD OF HEARING INDIVIDUALS

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Prepared by Wendy de Jeu, April 13, 2002

As soon as a deaf/hard of hearing person realizes they are having trouble understanding a person, they need to explain their hearing loss. This is important when talking to both family and friends, and to strangers. Doing so will help strangers to understand the reason for the difficulty and they will usually become more patient. Family and friends may often need reminders as well. Being open and honest about their difficulty in understanding a person's speech is one of the most important things that a deaf/hard of hearing person can do to ensure a communication's success. Standing there pretending that they're following the conversation just fine may often result in misunderstandings and embarrassment at some point down the line. Bluffing...letting someone assume you understood when you did not...is a common mistake of most hard of hearing people, and one which often leads into trouble: missed meetings or job assignments, social situations, even critical data such as medical and other emergency information.

It is necessary that deaf/hard of hearing individuals learn the skills to deal with communication difficulties. This is not a skill that can be learned overnight, or even, for many, in a short period of time. For many people it may take many years. A person's ability and willingness to step in and take control of his/her own understanding is dependent on many factors: acceptance of his/her disability, personality (e.g. shyness), feelings (e.g. self-consciousness), the situations, and the perceived importance of what may have been missed, etc. Also, it is not necessary that the deaf/hard of hearing person apologize for missing part of the conversation. There is no need to say "I'm sorry, I missed that." It is not their fault. They're doing the best they can with the hearing they've actually heard and understood, and what works for them to get the communication flowing again.

COMMUNICATION REPAIR STRATEGIES

- Repetition - Ask the person to repeat what they said e.g. "Could you say that again please?"
- Rephrase - Ask the person to rephrase what they said or to say it in a different way. e.g. "Can you please rephrase that for me?" or "Please say it again in a different way."
- Ask a question - Ask a general or specific question related to the part of the message you understood in order to understand the part that you missed e.g."She did what at two o'clock" or "Jessica was going where?"
- Key word - Ask the person to repeat the important words in the sentence e.g. "Can you repeat the main ideas of what you were saying?"
- Confirm - Confirm that you have received the correct message e.g. "I understand that I am to meet you at the mall at two o'clock. Is that right?"
":Did you say...?" 
- Spelling - Ask the person to spell the topic word/important words of sentence e.g. "Can you spell the name of the city you were talking about?" 
- Code words - Ask the person to spell the word using words that start with each letter of the word e.g. "Was that B as in baseball?'

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TYPICAL ACCOMMODATIONS FOR

HEARING IMPAIRED INDIVIDUALS

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Taken from "Working Together: An Employer's Resource for Workplace Accommodation", pp. 31-32, Human Resource Development Canada. 2000 

It is best to ask the person to explain their deafness or hearing loss to find out how they prefer to communicate with others (sign language, read, write, lip read, use of hearing aid or amplification device).

ACCOMMODATIONS

- written notes, or side-by-side computer communications
- email and real-time internet chat
- assistive listening devices - amplifies without background noise (FM systems, infrared or induction loop technologies)
- skilled and qualified sign language interpreters 
- sign language or cultural sensitivity training for coworkers and supervisors
- improved lighting for group and other interactive situations
- TTY - telephone communication device where conversation is typed instead
of spoken.
- telephone devices - amplifiers including those for headsets, sound frequency devices to increase clarity
- voice recognition or speech-to-text software 
- alternatives to voice mail messages (written by another party, pager, telephone relay message service)
- environmental factors (background noise reduction, appropriate and sufficient lighting, seating and positioning arrangements)

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RESOURCES FOR HEARING LOSS

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LIPREADING NATURALLY

Practical Lipreading and Communication Exercises for Everyone 

The Canadian Hearing Society - Peel Region, Ontario, Canada produced a publication 'Lipreading Naturally', 1993, written by Shirlee Smith and Frances Mezei. The book is written for people with hearing loss, family members, friends and professionals. It contains a series of exercises in what amounts to a course in coping with hearing loss in everyday situations while  improving speechreading and communication skills. An introduction provides clear communication rules for group facilitators and speechreaders (lipreaders), plus excellent guidelines on how to start a self-help group. The exercises are grouped into seven categories and include such topics as relationships, family involvement, personal support systems and daily interaction situations. The complete 143-page publication with pre-and post-tests, notes and bibliography can be used for class study, seminars/workshops or individual lesson plans. 

Retail Price: Canada: $16.00 including GST+ $5.00 postage and handling charges (Cdn Funds) United States: $11.95 + $5.00 shipping (U.S. Funds) 
Other countries: $14.95 + shipping (U.S. Funds)
It is available through: The Canadian Hearing Society, Peel Regional Office, 2227 South Millway, Suite 300, Mississauga, ON L5L 3R6, e-mail: Office@peel.chs.ca

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SELF HELP FOP HARD OF HEARING PEOPLE, INC. (SHHH)

Self Help for Hard of Hearing People, Inc, is a volunteer, international organization of hard of hearing people, their relatives and friends. SHHH publication "Hearing Loss: The Journal of Self Help for Hard of Hearing People" is full of information on the latest assistive listening technology, research, what's going on in the local chapters and at a national level, and articles about how you can live well with hearing loss. An annual conference is organized each year. To become a member of SHHH, you can write to: Self Help for Hard of Hearing People, Inc. 7910 Woodmont Avenue, Suite 1200, Bethesda, Maryland, 20814, United States. You can visit their website: http://www.shhh.org

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THE CANADIAN HEARING SOCIETY

The Canadian Hearing Society (CHS) provides services that enhance the independence of deaf, deafened and hard of hearing people, and that encourage prevention of hearing loss. CHS, through 27 offices, provides a wide range of health care and social services directly to deaf, deafened and hard of hearing people, using its own staff of audiologists, speech language pathologists, counsellors and sign language interpreters. You can visit the website at: www.chs.ca.

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ONLINE ANIMATED AMERICAN SIGN LANGUAGE DICTIONARY

Visit this site to learn sign language online: http://www.bconnex.net/~randys

This site is designed to help you learn about American sign language (ASL) and the Deaf community. To see how to sign a word click Sign links. After the sign loads it will begin to "animate".

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A RESPONSE TO THE INFORMATION

ABOUT EMPHYSEMA

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A reader's response to the statement "..emphysema is not curable" printed in the October, 2002, Vol. 6, Issue #2.

I have a recommendation which is hard to define. It has to do with hope and hopelessness, and providing an opportunity for a person with medical training to potentially destroy hope and faith in an afflicted one. Perhaps having four chiropractors in the family - my father, an uncle and two cousins - has made me super-suspicious of anyone with the audacity and insensitivity to claim any illness as "incurable". The body heals. What the mind conceives, is achievable. I believe that everything is possible, given time. Positive thoughts transform themselves into positive results and likewise for the negative. How many other diseases were considered incurable, that, over time, various means of healing were found to cure? I think we need to be very careful when using the term "incurable." I would hope a way could be found to hedge such proclamations with a note that other opinions exist, such as: "While it is the opinion of __ that__, we would like to hear from readers with additional/different information on the subject."

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To an American lady, in August 1912, 'Abdu'l-Baha said:

"All of these ailments will pass away and you will receive perfect physical and spiritual health...Let your heart be confident and assured that through the Bounty of Baha'u'llah, everything will become pleasant for you...But you must turn your face wholly towards the Abhá (All-Glorious) Kingdom, giving perfect attention - the same attention that Mary Magdalene gave to His Holiness Christ - and I assure you that you will get physical and spiritual health. You are worthy. I give you the glad tidings that you are worthy because your heart is pure...Be confident! Be happy! Be Rejoiced! Be hopeful! 

(‘Abdu'l-Baha, quoted by J.E. Esslemont , Baha'u'llah and the New Era, pp.109-110)

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REQUESTING ASSISTANCE FROM THE READERS

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(Editor's note: These two readers are requesting assistance from you and please send all  responses to fmezei@sentex.net)

I am hoping that this could be included in the newsletter since I rarely visit websites because where I am (Russia) and in my present situation, I have to be extremely careful with my online time. I am seeking current information and enlightenment about epilepsy, as one of our new youth in Nizhny Novgorod is greatly handicapped with this affliction. I would like to offer him whatever advice might be useful to him. As with many other people in Russia, (due to its difficult economic transition), he is no longer in a position to consult physicians, and the prescription medicine prescribed to him long ago must be bought and taken in reduced doses in order to stretch it out as long as possible. I would deeply appreciate any guidance and assistance with  this difficult situation.

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A dear Baha'i friend of mine has recently been diagnosed with congestive heart failure caused by a rare virus. Medical tests have revealed that the damage done to her heart is quite extensive and that there is no surgery that could repair the damage. The only alternatives open to her is to manage the symptoms with drugs and accept the real possibility of heart failure at any time or put her name on a list for heart transplant. My friend feels spiritually ready to accept the possibility of an early death but feels very uncomfortable from a spiritual perspective to consider a heart transplant, feeling that the heart more than any other organ has a special spiritual significance. Are there any other Baha'is who have had heart transplants who could share how they handled the situation and how they are doing now? Also does anyone have any specific guidance from any Institution of the Faith on the spiritual ethical considerations regarding organ transplants other than it being left up to the individual to decide. 

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QUESTION OF THE MONTH

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The focus for the upcoming issues will be on how to improve accessibility in the Baha'i and surrounding communities for persons with disabilities, illnesses and diseases of various kinds. This may include removing physical barriers, changing our attitudes and providing relevant support or available technology to ensure that everyone is a part of community life. Working together to provide basic information and accommodations as well as typical solutions will hopefully enable those struggling with a disability or illness to be involved in the community. After all, we all have disabilities/struggles of various forms. This information may also apply to the workplace. We will continue this consultative process. Some of the disabilities/illnesses we will consult about are (if there are others missing, please let us know):

1) Hearing Impairment
2) Visual Impairment
3) Mobility/Physical disability
4) Learning Disabilities /Attention Deficit Disorder
5) Developmental Disabilities
6) Brain Injuries
7) Physical Illnesses such as cancer, arthritis, heart condition, back impairment, alzheimer's, etc. 8) Psychiatric Disabilities/Mental Illness
9) Emotional

For the November issue, we will focus on learning disabilities, attention deficit disorder, and developmental disabilities. Please share your experiences, stories and comments on this subject. We look forward to learning from you!

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WEB SITE

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You can visit the website, obtain back issues and the Healing Through Unity Course at: http://www.healingthroughunity.org.

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PURPOSE OF THE NEWSLETTER

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"Healing Through Unity" is published for the purpose of sharing thoughts, comments and experiences on how the teachings of the Baha'i Faith are being applied to physical and spiritual health. Other than the quoted Holy Writings, the material in this newsletter represents the thoughts and opinions of the writers and has no authority. You are free to copy articles, provided you indicate the source of the article. There are 10 issues per year; it is not published during July and August. The newsletter is produced in Ontario, Canada.

Please send your stories, comments, suggestions or "Question for the Month" ideas to Frances Mezei by e-mail: fmezei@sentex.net.

PLEASE NOTE:

Many thanks to all of you who send such wonderful contributions for "Healing Through Unity" Newsletter. The decision to select and edit material submitted for publication is determined by the editor.

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