Down Syndrome Society, Rhode Island

Down Syndrome Society
of Rhode Island

99 Bald Hill Road, Cranston RI 02920     (401) 463-5751


Why Inclusion?

DSSRIBy John B. Susa, Ph.D.

John B. Susa, Ph.D. is Coordinator for Individual and Family Support at the UAP of Rhode Island. He is the parent of three adult sons who have special needs.

In 1955 Rosa Parks wanted to be included in society in a full way, something which was denied people labeled as "black" people! So Rosa Parks sat down on a bus in a section reserved for "white" people. When she was told to go to "her place" at the back of the bus, she refused to move, was arrested, and history was challenged and changed. All of this happened because Rosa Parks was tired of being excluded. Another powerful cry for "inclusion" is being heard today. This new cry is being raised by people with unrecognized abilities, the so-called "disabled". Many people whose abilities are regularly denied or ignored feel that society is not honoring their right to participate in society fully.

Those things that limit our ability to walk, speak, see, hear, learn, or interact in socially acceptable ways most call disabilities. Once we have named them, we seek to get rid of them because they clash with our cultural view that happiness is our correct condition and that hardship and adversity are limitations on feeling good.

Two models are used to help us make sense of the limitations in our lives and those we care about: medical and cultural. The medical model is focused on the limitations found in people's minds or bodies. This approach directs our energy toward discovering limitations and then seeking ways to contain or eliminate them. The cultural model emphasizes the social, civil rights or minority status aspects of disability. This model helps us focus on socially constructed aspects of disability; on its social meaning and on social obstacles as the primary problem for people with disabilities and their families.

At first glance, these approaches seem positive and powerful. A consequence of the medical model thinking is that we become hypnotized by our supposed limitations. We come to believe that only young, healthy, bright and otherwise perfect people are eligible for fulfillment. Until we attain these conditions, we consider ourselves and others wounded in ability to be creative or make a contribution. Many take on roles of helping others to overcome limitation. Efforts to help are continually frustrated, however, because limitations are inherent in all of life. Frustration builds upon frustration, as we can neither perfect the person we are assisting, nor can we perfect our own ability to overcome limitation.

An alternative paradigm is grounded in the recognition that everyone has a gift. A gift in this model is more than a talent or special ability. It can be anything that one has or does that creates an opportunity for a meaningful interaction with at least one other person. Gifts in this context are the fundamental characteristics of our human life and community. Two gifts that all people have to offer are presence and difference. Presence offers the possibility of meaningful interaction with someone. Meaning is only possible because of difference. Human interaction occurs because of presence and difference. Community arises from past interactions and is created in present interactions through a dynamic process.

However, much more needs to be done before we are all "in". It is generally accepted that "inclusion" means inviting those who have been historically locked out to "come in." Inclusion is recognizing our universal "oneness" and interdependence. Inclusion is recognizing that we are "one" even though we are not the "same".

Supporting giftedness can happen every day and everywhere. People of all ages and experiences are involved in fulfilling each other's gifts. It is a natural as breathing. The search for effective inclusive educational practices often starts with parents asking for help with strategies and approaches that facilitate, now and into the future, the community participation and membership of their son or daughter. Inclusive educational practices should be grounded in the recognition that all children need to learn the same important life lessons. All children are "one" in that respect.

As we advocate for inclusive educational opportunities for students who have difficulty learning, we should focus on those real life functional outcomes that will prepare them for life as members of the "in" group of their communities. Educational goals should focus on five critical outcomes:

1. Assuring a positive reputation for your child and increasing the respect that others show him/her - Everyone has gifts. Part of the purpose of going to school is discovering them and building on them. Do this in ways that make it possible for peers to see this process and have a chance to be part of it.

2. Building relationships with peers who are "in" the community - Successful relationships are based on strengths and common interests. Create an image of a desirable future. Invite others to join in making that future happen in school and elsewhere. Focus on strengthening personal relationships by encouraging people to plan, act and learn together.

3. Improving your child's real life skills of community interdependence, communicating, accountability, cooperative working, cultural competence, and functional academics. He or she may need assistance in different ways and places. How to receive and give as an equal partner is hard to learn but worth trying, even if it will take a lot of time and effort. Being able to fit "in" requires that a lot of effort needs to be made and a lot of learning needs to take place where community partners are present and where skills will be used.

4. Participation in activities that are meaningful for all involved - Mutually beneficial participation occurs when people have common experiences and interests. Supporting participation may require the control of and use of resources in new ways. Potential partners in participation may need support too.

5. Strengthen self-determination capacity - Make sure your child knows their strengths and learns how to accommodate their weaknesses. Encourage them to dream of a positive future worth working for. Help them find valued friends and allies who can help them plan and act on those plans. Help them learn that we can get better and stronger by experiencing success and/or failure.

Some children need more time to discover their gifts and learn the lessons that matter. The best way to acquire new skills in community membership and interdependent living is by practicing them. If the skills needed to fit "in" to the world, of children now and adulthood later, are most important, then the assumptions of how they can best be learned may need to be questioned. The belief that the way children learn to fit "in" is from the adults, parents and teachers, around them needs to be re-examined. Our growing experience with inclusion suggests that parents and teachers matter less and peers matter more in influencing the way all children turn out the way they do.

Providing and maintaining support systems for those who need extra help to discover and share their abilities is a civic responsibility, not a favor. It definitely becomes our responsibility as a society to remove barriers which uphold exclusion since none of us have the authority to "invite" others "in" or "out"! It is time we both recognize and accept that we are all born "in"! Parents who are advocating for inclusion in regular education are today doing the same thing that Rosa Parks did in 1955, challenging and changing our educational system. We should heed well the advice of the greatest articulator of equality and inclusion of the 20th Century, Dr. Martin Luther King, Jr. who said:

"Through education we seek to change attitudes; through legislation and court orders we seek to regulate behavior. Through education we seek to change internal feelings (prejudice, hate, etc.); through legislation and court orders we seek to control the external effects of those feelings. Through education we seek to break down the spiritual barriers to integration; through legislation and court orders we seek to break down the physical barriers to integration. One method is not a substitute for the other, but a meaningful and necessary supplement. Anyone who starts out with the conviction that the road to racial justice is only one lane wide will inevitably create a traffic jam and make the journey infinitely longer."

To paraphrase Dr. King, we parents need to know how to use the legal resources available and how to educate our children's teachers to make inclusion work. Using both approaches will make it happen for our children sooner than later. We need to say to our schools what that famous Wisconsin farmer said to Lou Brown, "Don't waste my boy's (girl's) time!" Then we need to roll up our sleeves, for the umpteenth time, and pitch in and get it done.


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Down Syndrome Society of Rhode Island
99 Bald Hill Road, Cranston, RI 02920
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