The Inclusion of Children and Youth with Special Needs in the Community
by Pamela Brode and Simona Dunn
Overview
This is an introductory workshop designed to promote an awareness
and provide new insight, from both a spiritual and practical perspective,
about maximizing the potential and meeting the needs for inclusion of
children and youth with physical, mental and learning disabilities.
Topics mentioned include parenting, education, varied learning styles,
vocational training, advocacy, and meeting the needs of inclusion in
both the Bahá’í and secular communities.
Abstract of talk
Good afternoon and welcome. Simona and I are very happy to be here
and we thank all of you for coming this afternoon. Out of curiosity,
can I see a show of hands from parents of children with special needs?
A show of hands of grandparents or other family members? Any siblings
here? A show of hands of professionals who work with children or youth
with special needs? A show of hands of others who are here today? Since
we don’t have time to go around the room for introductions, I’d
like to ask each person here to introduce yourself to the nearest person
whom you haven’t met before from where you are sitting. Tell each
other your name, where you are from, why you are here, and what you
hope to gain out of it. You each have two minutes to talk.
Just to hear from a few people, who would like to introduce someone
that he or she just met for the first time?
As Simona mentioned, my husband and I are the parents of three sons.
Our oldest son, Justin, was identified as academically gifted when he
was a child, and in the last several years he has traveled and lived
in several countries around the world — involved in various service
projects. This fall he will be entering his second year of law school;
and I’m delighted to announce that he was married a few weeks ago.
Our two younger sons, Alex, age 20, and Ben, 14, were born with a genetic
disease called Fragile X syndrome, which is the leading known hereditary
cause for a wide range of developmental disabilities that can include
mild to severe mental impairment, learning disorders, behavioral problems,
attention disorders and autism.
Alex and Ben function in the moderate range of mental impairment, but
they are spiritual, sociable, very loveable young people with delightful
personalities and a wonderful sense of humor. They love music, enjoy
sports, and like any other child or youth - they want desperately to
have friends, to be busy and active, and to feel a sense of belonging
to the community.
My husband and I love our children and made a commitment a long time
ago to do whatever we can to maximize their potential. Well, it’s
difficult enough to maximize the potential of any child, but to try
to maximize the potential of a child with special needs is a tremendous
challenge. In order to help children and youth with special needs realize
their potential, develop skills and lead a happy, busy, productive life,
whether it is a child with a normal to high intelligence with just perhaps
some attention or behavioral problems, or a child with more severe physical
or mental disabilities — it is critical that these children receive
appropriate interventions, services and care to help circumvent their
impairments, whether it is in their education, in their medical treatment,
in their home-life or in the community.
In fact, appropriate education and related services, such as speech
and language therapy, occupational therapy, reading therapy, vocational
training, good healthcare and other interventions and supports are so
crucial in the development of a child with special needs that it can
make the difference between that child growing up to lead a productive,
happy life with a job as a contributing member of society, or ending
up heavily medicated in an institution, or homeless, or in prison.
Raising children with special needs is extremely challenging —
however, the rewards are immeasurable. But parents cannot do it alone.
The support of the community is critical. The African proverb, “It
takes a whole village to raise a child”, never rings truer when
raising children with special needs. Unfortunately, however, the community
is not always supportive.
The following is from a Statement of the Bahá’í
International Community to the fortieth session of the United Nations
Sub-Commission on Prevention of Discrimination and Protection of Minorities
presented in August of 1988:
Until recently, the disabled have constituted a minority in obscurity.
Unlike certain other groups that fall victim to discrimination, the
disabled do not comprise a self-contained, close-knit social community.
Instead, they populate every social sector, every class, every age
group, every ethnic and religious community. And at every level, society
has tended to ignore them, believing them incapable of participating
in the community, or avoiding them as unpleasant reminders of the
fragility of our existence. (Bahá’í International Community,
Human Rights and Disability, August 1988 Agenda item 7: human rights
and disability)
Due to recent, severe cutbacks in the Federal Budget that funds services
for persons with disabilities, under the current administration the
prognosis doesn't look favorable for persons with special needs and
their families. I am not going to start rattling off statistics here,
because I believe that it is going to take a spiritual solution, as
well as a practical one to remedy the ills of society. Although we need
money to support the services, I don’t think that the problem is
money. This is a rich country. There’s plenty of money. The problem
is attitude and priorities.
I believe that we need to begin to change that attitude by promoting
a greater awareness to the community that children — all
children are indeed the most precious treasure it can possess and that
this nation needs to be more child-oriented.
The teachings in the Holy Bible help us better understand how precious
our children really are. From the Book of Genesis in the Old Testament,
it says: “God did tempt Abraham, and said unto him, ‘Abraham…Take
now…thine only son Isaac, whom thou lovest…and offer him there for a
burnt offering.’”
Although we know that Abraham had many sons, Isaac was the only child
of his beloved wife, Sarah. Abraham had prayed fervently for many years
that Sarah would give him a son, and when she finally did, Abraham exulted
in happiness and love for Isaac.
And yet, it says in the Book of Genesis:
Abraham took …Isaac his son… and went unto the place of which God
had told him… and built an altar there… and bound Isaac his son, and
laid him on the altar… And Abraham…took the knife to slay his son.
And the angel of the LORD called unto him out of heaven, and said
— ‘Abraham … Lay not thine hand upon the lad, neither do
thou any thing unto him: for now I know that thou fearest God, seeing
thou hast not withheld thy son, thine only son from me.’ And
God said unto Abraham…because thou hast done this thing, and hast
not withheld thy son: I will bless thee…And in thy seed shall all
the nations of the earth be blessed; because thou hast obeyed my voice.
(Holy Bible: Torhah) Genesis, 22:2 - 22:18)
What message do we learn from this story? Well, certainly it teaches
us about the importance of obedience to God; that we are rewarded when
we obey God; and also, that as much as Abraham loved his child, He loved
God more. But who did Abraham love only second to God? Isaac. What on
earth could be more precious to us than our children — for why
would God have tempted Abraham’s devotion to Him with anything
less than what was most precious to Abraham?
From the Book of Mathew in the New Testament, we are told that when
the disciples came “unto Jesus, saying, ‘Who is the greatest
in the kingdom of heaven?’ And Jesus called a little child unto
him, and set him in the midst of them, And said, ‘Verily I say
unto you… become as little children… Whosoever therefore shall humble
himself as this little child, the same is greatest in the kingdom of
heaven.’”
And from the Bahá’í Writings, ‘Abdu’l-Bahá, the eldest
Son of Bahá’ú’lláh, the Prophet-Founder
of the Bahá’í Faith, offers this beautiful prayer:
O Thou kind Lord! These lovely children are the handiwork of the
fingers of Thy might and the wondrous signs of Thy greatness. O God!
Protect these children, graciously assist them to be educated and
enable them to render service to the world of humanity. O God! These
children are pearls, cause them to be nurtured within the shell of
Thy loving-kindness…. Thou art the Bountiful, the All-Loving. (‘Abdu’l-Bahá,
Compilation, Bahá’í Prayers)
The Bahá’í writings also state: “Children are
the most precious treasure a community can possess, for in them are
the promise and guarantee of the future.”
So, which children do you think those passages are talking about? Who
are the little children beloved so by God? Who are these children that
are to be regarded as the most precious treasure a community can possess
and the handiwork of the fingers of Thy might and the wondrous signs
of Thy greatness? Who are the children that are referred
to as “pearls”? Are they the rich and privileged children?
Disadvantaged children? What about the poor and homeless children who
live in filth and squalor and eat out of garbage cans? What about the
children with disabilities? Are they also the most precious treasure
that a community can possess?
It says in the Bahá’í writings: “Every child
is potentially the light of the world…”
Bahá’ú’lláh writes, “He that bringeth
up his son or the son of another, it is as though he hath brought up
a son of Mine…” (Bahá’ú’lláh, The
Kitáb-i-Aqdas, p. 37)
And ‘Abdu’l-Bahá said, “The education of children
is one of the most great services. All these children are mine. If they
are educated and illumined, it is as though my own children were so
characterized…” Talk of ‘Abdu’l-Bahá in the Holy
Land: Star of the West, Vol. XIII, No. 6, p. 172.
The Bahá’í teachings promote the message of the
oneness of humanity and tell us that the One Almighty God created all
of humankind. If we believe that every human being is a descendent of
God and that each soul was created out of love, how can we not regard
each and everyone as a member of the one human family and each child
as a child of God? How can we disregard the spiritual reality of any
of our children?
It says in the Bahá’í writings:
READER # 1
O CHILDREN OF MEN! Know ye not why We created you all from the same
dust? That no one should exalt himself over the other. Ponder at all
times in your hearts how ye were created. Since We have created you
all from one same substance it is incumbent on you to be even as one
soul, to walk with the same feet, eat with the same mouth and dwell
in the same land, that from your inmost being, by your deeds and actions,
the signs of oneness… may be made manifest. (Bahá’ú’lláh,
The Hidden Words of Bahá’ú’lláh, p.
20)
‘Abdu’l-Bahá explains that the first teaching of Bahá’ú’lláh
is the independent investigation of truth. He says,
READER # 2
We must associate with all humanity in gentleness and kindliness.
We must love all with love of the heart. Some are ignorant; they must
be trained and educated. One is sick; he must be healed. Another is
as a child; we must assist him to attain maturity. We must not detest
him who is ailing, neither shun him, scorn nor curse him, but care
for him with the utmost kindness and tenderness. An infant must not
be treated with disdain simply because it is an infant. Our responsibility
is to train, educate and develop it in order that it may advance toward
maturity. (‘Abdu’l-Bahá, The Promulgation of Universal
Peace, p. 73)
So who among us have the responsibility of nurturing, training and
educating the children and helping them feel loved and accepted? The
Bahá’í Writings tell us “it is enjoined upon
the father and mother, as a duty, to strive with all effort to train
the daughter and the son,” adding that, “should they neglect
this matter, they shall be held responsible and worthy of reproach in
the presence of the stern Lord.” Regarding the role of the community,
the Bahá’í writings tell us:
READER # 3
The necessity exists, too, for individuals and the institutions at
all levels, which is to say the community as a whole, to show a proper
attitude towards children and to take a general interest in their welfare….
Children are the most precious treasure a community can possess, for
in them are the promise and guarantee of the future. They bear the seeds
of the character of future society which is largely shaped by what the
adults constituting the community do or fail to do with respect to children.
They are a trust no community can neglect with impunity. An all-embracing
love of children, the manner of treating them, the quality of the attention
shown them, the spirit of adult behaviour toward them — these are
all among the vital aspects of the requisite attitude…. An atmosphere
needs to be maintained in which children feel that they belong to the
community and share in its purpose. (The Universal House of Justice
Ridván Message 2000 to the Bahá’ís of the World)
How important is the education of children?
To complete a Bahá’í passage that I began earlier:
“Every child is potentially the light of the world — and at
the same time its darkness; wherefore must the question of education
be accounted as of primary importance.” (‘Abdu’l-Bahá,
Selections from the Writings of ‘Abdu’l-Bahá, p. 130)
It also states in the Bahá’í writings that “Among
the greatest of all services that can possibly be rendered by man to
Almighty God is the education and training of children …” (‘Abdu’l-Bahá,
Selections from the Writings of ‘Abdu’l-Bahá, p. 133)
Of course, to be realistic, not all children and youth have the same
mental and physical capacities, which is why identifying appropriate
education and interventions are so important. It says in the Bahá’í
Writings:
READER # 4
…education exerteth the strongest possible influence on humankind…
however… differences in the level of intelligence are innate… For
we see that children of the same age, the same country, the same race,
indeed of the same family, and trained by the same individual, still
are different as to the degree of their comprehension and intelligence.
One will make rapid progress, one will receive instruction only gradually…That
is to say, education cannot alter the inner essence of a man, but
it doth exert tremendous influence, and with this power it can bring
forth from the individual whatever perfections and capacities are
deposited within him. Thanks to a teacher's loving efforts, the children
may reach the highest levels of achievement; indeed, his benefactions
may lift some child of small account to an exalted throne. Thus is
it clearly demonstrated that by their essential nature, minds vary
as to their capacity, while education also playeth a great role and
exerteth a powerful effect on their development. (‘Abdu’l-Bahá,
Ibid., p. 132)
In the following passage, the Bahá’í writings firmly
assert it as a duty of the community to educate and train all persons,
regardless of level of ability:
READER # 5
It is the duty of those who are in charge of the organization of
society to give every individual the opportunity of acquiring the
necessary talent in some kind of profession, and also the means of
utilizing such a talent, both for its own sake and for the sake of
earning the means of his livelihood. Every individual, no matter how
handicapped and limited he may be, is under the obligation of engaging
in some work or profession, for work, especially when performed in
the spirit of service, is according to Bahá’ú’lláh
a form of worship. It has not only a utilitarian purpose, but has
a value in itself, because it draws us nearer to God, and enables
us to better grasp His purpose for us in this world." (Shoghi Effendi,
The Kitáb-i-Aqdas, p. 192)
“Every individual, no matter how handicapped and limited he may
be, is under the obligation of engaging in some work or profession.”
Certainly we will better understand how to maximize the potential, educate,
train and meet the needs for inclusion of all young people by striving
to meet the needs of our children and youth with the greatest challenges.
So how do we achieve this? How do we become effective advocates for
children and youth with special needs? Through the years, as advocates
for our own children, my husband and I have had to learn to play the
role of diplomat, negotiator and spokesperson. I have spoken at countless
public and private meetings in North Carolina before legislators, school
boards, public officials, administrators, teachers and health care professionals.
It’s been an exhausting journey, but we can’t give up. And
we have seen significant progress made through the years, as well as
some setbacks.
My husband and I have labored arduously to involve Alex and Ben in
activities that enrich their lives, help them develop skills, and provide
them with opportunities to be active participants, such as the Durham
year-long Special Olympics activities, Very Special Arts programs, summer
camps, and dances and other activities for the Special Population. The
boys also love to go to the movies, bowl, golf, play basketball and
soccer, and love to dance and sing — but are most comfortable doing
so when they are in an environment that supports their special needs
— such as the programs that are specifically geared for the Special
Population. Again, these services require the support of the community.
Advocating for the rights and needs of a child with special needs is
a responsibility given to the parent because the child is unable to
advocate for him or herself. The truth is that if no one advocates for
a child with special needs, and the child does not receive appropriate
services, the potential of that child may never be realized.
In addition to the report that I read earlier from the International
Bahá’í community to the United Nations, a similar
report was written in 1990 by Child Attorney and Director of the Durham,
North Carolina Child Advocacy Commission, Al Singer, which states the
following: “People with developmental disabilities are at a high
risk for being exploited, neglected, discriminated against, and even
abused. It is not uncommon that people with disabilities end up sheltered,
segregated, overmedicated, isolated, poor and performing degrading tasks.
And it is not uncommon for parents to want to be overprotective of children
with special needs because of societal attitudes.” (Singer, 1990).
That statement once again clearly demonstrates the critical need of
support from the community. And the greatest support that the community
can give is to provide appropriate education and training to meet the
needs of all our children. So what type of education are
we talking about?
The Bahá’í Writings tell us that the spiritual education
of children and junior youth are of paramount importance to the further
progress of the community. It states in the Bahá’í
Writings: “Ye should consider the question of goodly character
as of the first importance. It is incumbent upon every father and mother
to counsel their children over a long period, and guide them unto those
things which lead to everlasting honour.” (‘Abdu’l-Bahá,
Selections from the Writings of ‘Abdu’l-Bahá, p. 134)
There are also countless passages in the Bahá’í
Writings that promulgate the advancement of the arts and sciences and
all forms of education that are beneficial to the advancement of humanity.
From the Writings of Bahá’ú’lláh
READER #6
As to the children: We have directed that in the beginning they should
be trained in the observances and laws of religion; and thereafter,
in such branches of knowledge as are of benefit, and in commercial
pursuits that are distinguished for integrity, and in deeds that will
further the victory of God's Cause or will attract some outcome which
will draw the believer closer to his Lord. (From a Tablet of Bahá’ú’lláh
— translated from the Persian and Arabic; Compilation, Bahá’í
Education, p. 9)
Is this education of children limited only to their home life and classrooms?
Of course not. Therefore, what role can the individuals in the community
play in educating the children and integrating them into the community?
It says in the Bahá’í writings:
READER # 7
…although providing spiritual and academic education for children
is essential, this represents only a part of what must go into developing
their characters and shaping their personalities…. The necessity exists,
too, for individuals and the institutions at all levels, which is
to say the community as a whole, to show a proper attitude towards
children and to take a general interest in their welfare.
I think it is helpful to keep in mind that for children the whole world
is a big classroom. Children and youth are always watching us. They
copy us, emulate us and learn from everything that we do in front of
them. If we don't want them to use profanity, what must we do? Not use
profanity. If we don't want them to drink alcohol or use drugs, what
must we do? If we want them to be truthful, show courtesy, respect and
politeness, not backbite, nor be prejudice, what must we do? And so
whatever we wish to teach them, the most effective way is through, what
the Bahá’í writings refer to as, “the dynamic
force of example”.
Let’s face it — every time an adult is in contact with a
child, he or she is a teacher, because children learn from the examples
that we set. And if we want our children without disabilities to be
kinder and more loving to children with disabilities — what must
we do?
Encouraging our children without special needs to interact with children
who have special needs is extremely important. Inclusion is much more
than simply tolerating one's presence. It can be very lonely to be in
a crowd and feel like an outside or an invisible observer or even a
loveable mascot. To me inclusion means providing the supports and opportunities
for all of us to be fully integrated into the community as active participants.
In the advocacy training workshops that I’ve done in Durham, we
tell parents that the first prerequisite in creating an inclusive environment
for our children is to love them with unconditional love, which means
that our love for our children should not be contingent upon them meeting
certain expectations or living up to specific standards that we may
have for them. Not that there is anything wrong in setting realistic
expectations for our children — certainly we should have goals
for them and strive to help them reach the highest possible standards,
but our love shouldn’t be based on whether our children can or
cannot meet those expectations.
Child psychiatrist and author, Dr. D. Ross Campbell, who also happens
to be a Bahá’í, writes in a chapter from his book
“How to really love your child,” about the challenges of showing
love to children with special needs. He explains, “...a child with
perceptual problems has difficulty taking in information from his environment
and transmitting it to his mind. Consequently when such information
as visual images, sound, and touch is processed in a child’s mind,
he has difficulty understanding it clearly.”
This may explain why many children with developmental disabilities
suffer from low self-esteem, depression, shyness and emotional and behavioral
disorders. Dr. Campbell writes, “If we know that perceptually handicapped
children are almost predisposed to poor self-concept feelings of being
unloved and unacceptable, and of depression, how can we help them?”
I firmly believe that the area where they require the greatest help
is the area, which is largely overlooked… these children need most of
all to feel genuinely, unconditionally loved. They will then be better
able to overcome their handicaps.
“How do we do this?” Dr. Campbell continues, “The same
way we give love to all children, except that we must remember that
although their perceptions are distorted in some areas, they are seldom
distorted in all sensual modalities. These children almost always need
more affection and other means of conveying love in order to feel loved.”
In a talk given by ‘Abdu’l-Bahá in the year 1911,
He addressed the topic of love. He said, “In the world of existence
there is indeed no greater power than the power of love. When the heart
of man is aglow with the flame of love, he is ready to sacrifice all-even
his life. In the Gospel it is said God is love.”
I think that the following passage from the Bahá’í
writings helps us better understand unconditional love:
READER # 8
This love is attained through the knowledge of God, so that men see
the Divine Love reflected in the heart. Each sees in the other the
Beauty of God reflected in the soul, and finding this point of similarity,
they are attracted to one another in love. This love will make all
men the waves of one sea, this love will make them all the stars of
one heaven and the fruits of one tree. This love will bring the realization
of true accord, the foundation of real unity. (‘Abdu’l-Bahá,
Paris Talks, p. 179-181)
Unconditional love. Working with the Special Population for the last
20 years has provided me with numerous opportunities to see unity in
diversity in action in egalitarian, truly inclusive and very spiritual
and loving environments. The endeavors that I have been involved with
not only have included the active participation of individuals who represent
diversity in age, gender, ethnicity and culture, but also in extreme
diversity in levels of abilities. Certainly, everyone needs to feel
accepted for who they are, to feel that they have a function and purpose
and sense of belonging to the community. Everyone wants to feel needed
and productive.
To me, an excellent example of inclusion is a story about my youngest
son Ben, who is in a special education class at the Durham School of
the Arts Middle School, which is a regular public school that offers
several arts electives. Two years ago, I went to see him perform in
a recital in his dance class. Ben was the only student in the class
with impairments, and so I was amazed when I saw Ben performing all
of the same movements as the other students! He was great! I had no
idea that he had the coordination to do those movements. It was apparent
to me that his dance teacher had worked very hard with him and gave
him a lot of special one-on-one.
Ben, however, did not dance in the second part of the recital. The
movements were much more advanced and difficult for Ben. However, Ben's
dance teacher had wisely worked with Ben to identify something that
he could do to keep him in the program. She put him in charge of operating
the CD player. Ben was the music man — and he was
thrilled. He sat in the corner on the stage, doing something that he
loves to do at home — inserting and taking out CDs, turning on
and off the CD player, and his timing throughout the recital for each
different dance routine was perfect. He was so proud and looked so happy
up there. And everyone was delighted about it. I could see that his
classmates were happy that Ben was part of the entire program, the audience
was moved - and Ben was as happy as could be!
It would have been much easier for the teacher to have just removed
him for that portion of the recital, but instead she identified something
that Ben could do and enjoyed doing — and best of all he was a
valued, contributing member of the team. It takes creativity, imagination,
compassion, an extra effort of work and a lot of love — but with
that extra effort we often see miraculous results.
Music and all of the arts are a very powerful means in educating children
and youth. Particularly music, which is a universal language and probably
the most communicative of all modalities, has proven to be extremely
successful in improving communication, verbal, social, academic, coordination,
and motor skills in children and youth with special needs.
The Bahá’í writings say: “[Music] has wonderful
sway and effect in the hearts of children, for their hearts are pure,
and melodies have great influence in them. The latent talents with which
the hearts of these children are endowed will find expression through
the medium of music… Likewise, it is necessary that the schools teach
it in order that the souls and hearts of the pupils may become vivified
and exhilarated and their lives be brightened with enjoyment.”
(‘Abdu’l-Bahá, The Promulgation of Universal Peace,
p. 52)
(Below are handouts that were given out at the workshop):
Contact Information: Pamela Brode
Phone: 919-544-9306
E-mail: pbrode@mindspring.com
Note: It was clear to me, as I left
this workshop, that there needed to be some type of a Bahá’í network
for parents and professional who worked with persons with disabilities
to be able to not only share dialogue and work together to improve services
for their children, but also to provide each other with support.
And so I am pleased to announce the recent formation of a new network,
via E-mail, for parents, professionals and volunteers who work with
children, youth and adults with special needs! The network is called
BAND (Bahá’í Advocacy Network for Persons with Disabilities).
The mission of BAND: To promote
an awareness of and improve services for children, youth and adults
with physical, developmental and/or learning disabilities, for the purpose
of: (1) maximizing their potential; (2) meeting their needs for inclusion
in both the Bahá’í and secular communities; and (3) providing support
to their families.
BAND, a grassroots project, has been providing an opportunity
to exchange on-going dialogue, suggestions and information among North
Carolina Bahá’ís,including professionals and volunteers who work
with persons with special needs; individuals who are affected themselves;
and family members of children, youth and adults with a wide range of
disabilities, such as Multiple Sclerosis, mental impairment, learning
disabilities, autism, epilepsy, emotional, mental and behavior disorders,
visual impairment, hearing impairment, and other physical disabilities.
Also, there has been an interest expressed among the participants to
open the network up nationally to other Bahá’ís.
Comments, suggestions and questions about BAND are welcome!
Please E-mail to: pbrode@mindspring.com
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Bahá’í
Writings on Inclusion
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