Educational Articles - Summary

Running head: PARENT GUIDE COMMUNITY INCLUSION 1

Guide to Including Children with Disabilities in

Community Settings in the Arab Gulf Region

Effat Shugdar

University of Northern Colorado

PARENT GUIDE COMMUNITY INCLUSION 2

Abstract

Many parents in the Arab Gulf Region avoid integrating their children with disabilities into their

local community due to negative cultural beliefs about disabilities and general unfamiliarity with

disabilities. Using information from research conducted in the United States, successful

strategies for inclusion in community settings have been identified that may be useful to parents

of children with disabilities in this region of the world. Strategies which can be successful

include locating accessible activities when they exist, increasing familiarity with specific

community settings and activities, finding opportunities for children to communicate, managing

child behavior in public, and creating parent-to-parent networks. The goal of the application of

successful strategies for community inclusion is to enable Arab Gulf parents to understand, plan,

and develop ways to include their children with disabilities in real activities taking place in their

own communities.

Keywords: inclusion, children with disabilities, community settings, Arab Gulf Region

PARENT GUIDE COMMUNITY INCLUSION 3

Guide to Including Children with Disabilities in

Community Settings in the Arab Gulf Region

Families who have children with disabilities face numerous obstacles for successful

inclusion of their children into different community settings. Some of the consequences of

not participating in society include children with disabilities being denied the right to live

their lives as others do, such as segregation of these children from others and prohibitions

or limitations for these children to go outside and see different places and people. This

exclusion from normal community life can lead to increased behavioral and emotional

problems for these children. Such unfairness seriously hinders children with disabilities’

awareness and experience to engage with others and to explore the environment around

them.

The social and emotional development of children with disabilities is affected by the

number of different settings and various kinds of interactions, such as with peers without

disabilities, and people outside of school settings. Including these students with significant

needs in the community will help the child engage in interactions with other people more easily

(Bronfenbrenner, 1979). Children with disabilities feel more comfortable when they are familiar

with a variety of community settings (Souza & Kennedy, 2003).

Families within societies where disability awareness and disability rights are still

emerging as publicized and discussed issues are often hesitant about including their children with

severe disabilities in the social milieu and activities of their culture. Their hesitation may involve

fear of disapproval or embarrassment. Yet, this hesitation may also have origins in uncertainty as

to how to make such an experience successful for themselves and their children. As professionals

in the field of special education, we have a responsibility to guide families in finding ways to

PARENT GUIDE COMMUNITY INCLUSION 4

include their children with severe disabilities in the larger community around them. This

involves identifying and communicating to them strategies for successful community inclusion.

This paper will explore first the experience of being a parent of a child with a severe disability in

the Arab Gulf Region. Next, it will describe what is meant by an effective strategy for

community inclusion. Lastly, it will examine specific strategies that can help parents provide

opportunities for their children with severe disabilities to experience life in the community.

An Arab Gulf Region Perspective on Having a Child with a Disability

From previous experiences working with parents who have children with severe

disabilities in the Arab Gulf Region, I have found that there is only a small minority of parents

who are willing to include their children with disabilities in community settings. On the one

hand, Arab Gulf society is more understanding and accepting of children with hearing or vision

disabilities. The parents of these children often do not feel devalued by including their children

in the community. On the other hand, parents of children having disabilities with very evident

effects on their intellectual, physical, communication, or emotional expression often avoid

engaging their child in different community settings, such as going to restaurants, shopping,

traveling, or parties because the stigma and lack of knowledge about these disabilities creates

more discrimination, guilt, and rejection.

There are three major reasons that reinforce Arab Gulf parents’ decisions to avoid

including their children with disabilities in a variety of community settings. The first reason is

that parents who have children with disabilities may feel ashamed to be accompanied by their

children with disabilities in the community or public areas because of negative cultural

judgments about what can be expressed in public versus what is private; i.e., what should be

permitted versus what should not be disclosed in the relationship between family and the wider

PARENT GUIDE COMMUNITY INCLUSION 5

society. Further complicating the picture are feelings that some Arab parents may have that they

are being viewed by their neighbors and others as having done something corrupt, and are

therefore being punished by having a child with disabilities. These parents then feel even more

ashamed and guilty to walk with their children with disabilities in public view (Arab Gulf

Network for People with Disabilities, 2009). Yet, at the same time, many of these parents are

also attempting to cope with perceptions that their children should have the right to live life as

other individuals in Arab society. This mixture of emotions regarding keeping what is in the

family in the family, shame over how others may view them, and yet knowing that their children

deserve more than the sheltered life that they are providing impacts not just the opportunities

their child with a severe disability will have over his/her lifetime but also the interactions of

these parents with each other and with other members of the community.

In Arab Gulf society, it is the mother who is primarily involved with her child and who

plans and carries out activities for her children. This puts increased pressure on mothers who

have a child with a disability, particularly when the child has severe disabilities. Even in

countries where disability is more widely understood and accepted, a mother’s anxiety of stigma

regarding her child may have a negative effect on her relationship with her child, which further

encourages the mother to isolate her child from the community (Groce, 1985). Mothers of

children with disabilities often feel devalued and discriminated against from others who do not

have children with disabilities in the community. Since communities tend to respond to these

mothers differently when contrasted with their responses to children who have typically

developing children; this encourages the mother of child with a disability to sometime feel

jealousy and anger toward the mother of a child without disability (Geenen, Powers, & Lopez-

Vasquez, 2001). Because of longstanding cultural patterns, these effects are even more

PARENT GUIDE COMMUNITY INCLUSION 6

pronounced in the Arab Gulf Region than in the United States and other countries where

disability issues are more out in the open.

A second reason Arab Gulf parents may avoid including their children with disabilities in

community settings is because of limitations in community activities that are actually accessible

to children with disabilities in the Arab Gulf Region. There is a lack of available and

accommodated facilities for these children to go to and enjoy, such as public libraries, family

clubs, restaurants, and commercial shops. Al-Turaiki and Joseph (2004) recommended that more

physical adaptations be constructed in public places to enhance their accessibility for people with

disabilities, thereby helping encourage them to go places more easily and spend enjoyable times

with their families.

The third and final reason for limited participation in community settings, and the one to

be examined in detail here, is that parents are not educated about how they can include their

children with disabilities in community settings. Ehrmann, Aeschleman, and Svanum (1995)

reported that parents who have children with disabilities need support in including their children

in community settings. Thus, parents who have children with disabilities need instruction and

coaching which is vital to improve their knowledge about how to integrate their children with

disabilities in different community settings (Day, 2000).

Strategies for Successful Community Inclusion

Strategies for successful community inclusion are steps and procedures that can help

Arab parents with children who have severe disabilities provide opportunities for these children

to do as their peers do and to engage in community life. Such strategies should give direction

and guidance to these parents by providing explicit steps for them that can result in more

inclusion of their children in community life and with fewer cultural barriers. As a result,

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parents’ inclusion of their children with disabilities in the community can become both more

successful for the children and enjoyable for all family members. Five specific strategies will be

examined here: (a) locating accessible activities, (b) increasing familiarity with specific

community settings and activities; (c) providing opportunities for children to communicate; (d)

managing children’s behavior in public; and (e) creating parent-to-parent networks.

Locating Accessible Activities

Especially when children have disabilities that impact their movement and awareness of

space, universal design in buildings can help them experience full inclusion in their communities

(Turnbull, Turnbull, & Wehmeyer, 2007). The concept of universal design was created to make

buildings accessible to all people. Examples of universal design include buildings provided with

curb cuts, electronic and wide doors, and clear aisles. All of these accessibilities allow children

with disabilities to move more easily and safely in the physical environment.

Parents who have children with physical disabilities need to consider locating and

selecting places that are designed to be accessible for their children so that all can fully enjoy the

opportunities offered by particular community settings. In the Arab Gulf Region, new

constructions are more likely to include features of universal design, such as some contemporary

shopping malls, large grocery store chains, modern restaurants located in malls, and newly-

designed mosques. Special education professionals can help parents be aware that such places

exist, and assist them in locating such settings that are near their home.

Increasing Familiarity With Specific Community Settings And Activities

Many community settings in Arab society are not presently accessible through universal

design applications. Nor is universal design accessibility always a concern when a family has a

child with a severe disability. Sometimes, fear may be associated with simply how best to

PARENT GUIDE COMMUNITY INCLUSION 8

navigate an area of the community most efficiently, concerns for pedestrian safety, or concerns

with how to ensure partial participation of a child in an activity. A family can overcome some of

their concerns by analyzing the environment to determine its expectations, the skills that could be

useful, the assistance that the family members will need to give the child to make the experience

enjoyable and successful, and what parts of an activity a child can do with and without

assistance.

Referred to in the United States as ecological analysis (Falvey, 1989), this process offers

a way to begin being in the community safely and enjoyably. For example, the parents may want

to take the family, including the child with a severe intellectual disability, to a local shopping

mall for a day excursion. An advance trip to the mall by the parents can identify best entrances;

family-friendly restaurants; places for resting and watching; and a specific store or stores that can

offer particular activities that the child may enjoy for short times. The trip is then planned by the

family from start to finish, including the roles played by the various family members in different

locations and activities.

During an activity, the parents can also bring along a familiar item that the child enjoys,

such as a toy or candy. A familiar item can help the child feel comfortable in new situations.

Also, parents can do a “trial run” by going to the location of a special event with the child at a

time when it is less crowded. The next time they all go to this place, it will be a familiar to the

child. Such strategies can help children with disabilities to be more familiar with people and

places and to interact positively in the larger community.

Providing Opportunities For Children To Communicate

Communication is a natural skill that all children need to develop and learn from their

daily activities (Turnbull et al., 2007). Children with communication difficulties are often unable

PARENT GUIDE COMMUNITY INCLUSION 9

to let others know their physical needs, to interact with others in a sustained and satisfactory

ways; or let others know what they are feeling and thinking. To help, parents can structure

opportunities for their children to interact and communicate with others by encouraging their

children to introduce themselves, talk about incidents that happened, and discuss achievements at

their school or events with their family members. Many children who have difficulty expressing

themselves with words are responsive to questions, which can be strategically asked to offer

opportunities for children to construct a story or describe an incident that happened at some point

in the day or week. Parents can model these strategies when they are in social events at home,

visiting with neighbors, or in community settings, so that other people can become more

comfortable interacting with the child who has difficulty communicating.

Children in the United States are often provided with sophisticated communication

devices that allow them to construct with pictures, words, or symbols messages that others can

see or hear. These devices often may not be available to families in the Arab Gulf Region, but

simple graphic representations can be provided the child to identify important tools, activities, or

people in a child’s life. Note cards, for example, may include words and pictures to present the

most commonly used expressions in communication (Downing, 2000; Turnbull et al., 2007).

When children have pictorial or written word representations that they can use to communicate,

it is important that parents keep these accessible, encourage their use when appropriate, and to

use the pictures and words themselves when they are communicating with the child.

Simply because a child does not speak does not mean that he or she has nothing to say

(Fisher & Fisher, 1996). It is important to honor all of a child’s efforts to let others know what

he/she wants and needs and to include them in ongoing discussions and activities among family

members whether or not they add to a discussion with spoken words. We can, of course explain

PARENT GUIDE COMMUNITY INCLUSION 10

something, or say something in a different way, when a child needs help understanding what is

being said. However, it is best to believe that a child can comprehend much that occurs and is

said in his/her environment rather than to assume that little or nothing is comprehended by the

child. Often, when we assume understanding, we learn that more is actually comprehended than

we might have at first guessed, and greater understanding will emerge when the child feels that

the adults believe in him or her.

Managing Children’s Behavior in Public

For better or for worse, people form impressions of others based on what they see them

do in public places. If they see a child behave in a manner that matches expectations of a setting,

than onlookers either don’t notice at all or they notice the child in a favorable way. If a child’s

behavior is unexpected or disorderly, then disapproval may be felt or expressed, and the

impression formed may be long lasting.

Parents of children who have behavior problems can encourage their children to do tasks

in the community. For example, they can ask the children to select their food from the menu in

the restaurant, let them push the grocery cart, give them the opportunity to pay the money to the

cashier, or think through and make alternative choices when what is wanted is not available, such

as a restaurant not having a desired menu item.

Another approach to addressing discipline concerns is to develop a system of nonverbal

signals to be used by the parent with the child, which mean when they are delivered that the child

is to observe what certain others are doing (parent, particular sibling) and to do the same. Such

signals could be gestures or facial expressions. The parent can then focus on the way home on

what the child did that was right, reviewing the positive accomplishments and the moments when

the child was paying attention to the parent’s signals.

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Sometimes it is helpful to review in advance with the child two or three things for the

child to remember. For example, one might include: (a) stay with the family; (b) keep your voice

down; and (c) keep your hands by your side unless given permission to touch something. The

reminders could be reviewed at home or in the car, right before entering a community context.

Other more complicated systems for assisting with discipline include preparing and

reading a social story (Sutton, 2011); using pictures to prepare a child in advance for an

upcoming event; or providing a visual schedule to indicate the structure of the day and event, and

to identify the place and activities (Souza & Kennedy, 2003). Special educators need to develop

the skills to do these more advanced procedures, and to be ready to assist families in

implementing these strategies so that their children can access community environments safely

and without worrisome incidences.

Creating Parent-To-Parent Networks

As a Saudi Arabian writer and citizen, and from my experience, people in our region

develop their beliefs regarding disabilities from their cultures, traditional background, and also

from misinterpretation of religious beliefs. They may believe having children with disabilities

means God is punishing them for something evil they did in their lives. Or they may believe that

children with disabilities are something caused by mysticism or demons. They may not see that

disability might be the result of health or medical outcomes, or an event of birth that should be

treated as a possible and natural outcome of life. Therefore, they avoid including their children

with disabilities in the community because of the stigma.

Arab Gulf parents can include their children with disabilities in spite of cultural belief

barriers and can face society with a greater sense of their own personal power. However,

initially, parents may want to begin by working together, creating networks within communities

PARENT GUIDE COMMUNITY INCLUSION 12

for parents of children with disabilities to meet and talk with each other. In this network, the

parents can work collaboratively together in taking their children with disabilities out in the

community. The parents can discuss their concerns regarding their children; for example, the

places they can go with their children, activities they can do with their children, and appropriate

strategies that works with each child of each family. Most importantly, they can provide each

other with increased support for initiating more inclusion.

These parents may want to have weekly meetings or plan parties that have activities and

exercises for their children in their homes. When these parents become familiar with each other,

they can go into the community as a group, and thereby, be stronger and more confident in

facing society.

Conclusion

I have presented a number of strategies for successful community inclusion that I believe

can be useful for Arab Gulf Region parents to include their children with disabilities in a variety

of community settings. These strategies are based on research and practices I have observed or

have read about in the United States, and they are adapted here to be a guide to Arab Gulf

parents. The strategies for successful community inclusion are particularly discussed in

conjunction with the impact of cultural issues on including the children with disabilities in the

community, such as stigma, guilt, discrimination and fear.

Special educators, including myself, have an obligation to assist families in becoming

part of our culture and the communities of our region. It is not enough just to train children with

severe disabilities in schools to perform the adaptive skills required to survive and be functional

in the community. If we are to make a difference, we must directly work with families, assisting

them to open doors for their children, so that community life becomes a real possibility for them.

PARENT GUIDE COMMUNITY INCLUSION 13

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