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Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

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Tuesday, June 15, 2010

WHAT DOES INCLUSION MEAN?

The word," inclusion" is coming up a lot, lately, related to people with dd.
As usual, points of view are varied. Here are two:

Heather N. wrote, asking that Developmental Disabilities Exchange feature the "community"-based services of the business her PR company promotes. Since the purpose of this blog is dialogue and mutual understanding, rather than promotional, it doesn't seem appropriate to name the business, here. However, I do find that her description of their philosophy pretty much sums up how many people have described their idea of what "inclusion" means. Here are excerpts from her letter along with a quote from the website of the company she is promoting.

Hi Saskia,
My name is Heather_, and I work with M___, a non-profit aimed at providing housing and support for people with intellectual and developmental disabilities." "It believes that individuals with intellectual and developmental disabilities deserve the opportunity to live a quality life, receive individualized services and socialize with family and friends in or near their home communities."

"Like many of the facilities you have written about, M____ gains most of its funds from Medicare with another 10 percent coming from private donations." , "we’re trying to raise $25,000 to help provide individuals with disabilities homes, jobs and a better quality of life."

From the company's website: "We provide thousands of Americans with intellectual disabilities complete care — everything from homes and clothing, to meaningful work and the pursuit of personal happiness."

Here is another's perspective. Responding to my question about whether or not "inclusion," applies to residents of state-run residential centers, Isadora Arielle, wrote about her son's experience:

Hi Saskia,
My son, Neil, is now 18 and has been living at FHMC
( a State-run residential habilitation center in Bremerton Washington*) for 3 years. Before that, we did the single parent, only child thing, with Neil attending a special ed program in the local schools. In the public schools, some parents pushed for full inclusion with the idea that autistic kids and others in the special ed program would be included in regular classrooms with a 1:1 aide, and participate in all the usual school classes and activities, just like all the mainstream kids. Unfortunately, this is another idea (like "community") that sounds good on the surface---equality for all--- but doesn't work out so well for people like my son. So for me, even though "inclusion" and "community" seem to be lofty ideals, in my opinion they serve to enforce a level of conformity that isn't right for everyone.

I believe autistic, and other developmentally disabled people, who are wired to totally ignore the norms of our society, and care not a whit for what anyone else thinks, are actually great teachers for all of us. Instead of trying to get these beautiful, unique souls to come down to earth and live "normal" lives, we should be striving to live by their examples, according to who we are, as individuals. Promoting choice and honoring, even celebrating, our differences and preferences. Not trying to stuff everyone into neatly labeled boxes.

FHMC provides my son with plenty of inclusive, community activities, and a level of independence that far exceeds what can be provided in a community residential setting. Neil likes having more people around, even when he doesn't feel like interacting with them directly. He has more room to move indoors and outdoors, within the space he calls "home." So yes, I think RHC residents are being included in their communities, and again, its a matter of maintaining choice, rather than limiting choice to a narrow definition.

That's my opinion.
Thanks for asking, Saskia
Isadora Arielle



What do you think about what Heather and Isadora have written? What does "Inclusion" mean to you? Please share your experience &/or perspective . (To open the comment box, below, just click on "comments" and then, start writing; or paste in what you have written & copied from a separate page....or send me your writing and I will post it for you.)
Saskia

5 comments:

  1. Inclusion to me is a Continuum of Care. I do not like to use the word inclusion since it has become a buzz word for those who want to force those with different abilities into a mold that does not fit them. Who are they really trying to make feel better?

    Many times in the years of being a parent of disabled children, I have seen many in denial of the disabilities of their children. When "inclusion" is forced upon those that would do better with their own peers, no one wins. The efforts put into trying to make these kids "included" in typical classes and activities were put into finding what that individual really likes to do and enabling them to participate in their community that best fits their needs would be a much better use of energy.

    Inclusion is very individual - it is not dependent on the place of residence but on the interactions of people.

    ReplyDelete
  2. One more comment - coming as a parent of typically-abled and disabled children.

    At what point to the rights of one child interfere with the rights of another? This thought is critical when it comes to classrooms and education. When a disabled child rules the classroom and the education and/or safety of the other children is jeopardized, is that fair to anyone? The typical children (and the family) get aggravated because their child is not getting an education because all the attention is going to the child with the highest needs.

    The typical children come to resent the disabled children. Rather than what is promoted as a "win-win" situation this becomes a "lose-lose" situation. People of all abilities like the company of those like themselves.

    I am including a link to a page of the L'Arche newsletter in which a boy with Down Syndrome writes. He states that he is very lonely because there is no one like him in his neighborhood or school. The place he feels best and loves the most is camp because there are people like him there and he feels comfortable. This is really worth reading to get a perspective on this idea.

    http://media.causes.com/ribbon/820860

    ReplyDelete
  3. Community - Neighborhood - Institution = Semantics

    What do all these words mean? Depending upon your biases they could mean the same thing or very different things.

    Residential Habilitation Centers (RHC) are "institutions" yet they are also neighborhoods and communities. A private home is also part of a neighborhood and community yet may be a prison for someone too. What makes one a prisoner is not necessarily the place of residence.

    What would be a word for the most appropriate place of residence for one to thrive in? Be it a RHC, group home or private home?

    ReplyDelete
  4. So many thought provoking comments! They are really making me think! Heather's writing: "that individuals with intellectual and developmental disabilities deserve the opportunity to live a quality life, receive individualized services and socialize with family and friends in or near their home communities," inspires me to add: "wherever home is."

    Isadora's sharing of her and her son's experience & her eloquent recognition of the importance of celebrating and honoring differences, and providing choices that fit the person.

    Then Cheryl's question: "What would be the word for the most appropriate place of residence for one to thrive in? To this great question, I want to say, "Home." What would be your answer? I would also have to add that the description of "home" has to vary with the needs of each person. But.. it just dawns on me that is the same for most of us: don't we look for places to live that meet ours and our family's needs?

    So.... then...could it be that the "continuum-of-care" thing that Cheryl equates with "inclusion"....are we talking "golden rule", here? You know: doing unto others as we would be done by? Could it be as simple as providing the range of residential and other services called for to meet the needs of individuals, that is persons with very individual needs?

    I'm just brimming over with thoughts, but I need to give you a chance to contribute. What comes up for you about "inclusion?

    Namaste!
    Saskia

    ReplyDelete
  5. The thoughts are well versed and insightful. Most important is that inclusion refers to being included in the unit of people at any point in your space and place. If you do not understand, cannot participate, do not hear or perhaps cannot see, your opportunity to participate and feel inclusion is hindered and therefore unsatisfactory. Putting a person with a developmental disability in a person group that the person is unable to communicate with, or hear or understand than the frustration becomes unbearable and negative responses should be expected. Experience has shown that there are persons with DD who can not participate but who listen to the voices and the intonation and respond accordingly. They may hear music and not be able to express joy or dismay at the sounds but their responses will be observed as either positive or negative. Inclusion is a very individual response and cannot be cookie cuttered for all persons. In some cases calm, expressive love can help overcome resistance to new inclusive experiences but it is still a individual response mechanism. MW

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Comments are encouraged. By sharing perspective, personal experience, both positive & negative, ideas, resources and support, readers can enhance each others&; understanding and we will all benefit.