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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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Monday, March 29, 2010

Aimee Mullins at TEDMED 2009

There is a lot of emphasis, lately on language, especially debate over the words "mental retardation." On the one hand, with regard to public services, diagnoses of pathology are often required to obtain them. We have to be careful that in insisting on retiring old language, we somehow retain the ability to access needed services.

On the other hand, language very much shapes our perceptions;, which, in turn, shape our relationships with others. How we think about people with "disabilities" may have everything to do with how we treat them and how they, in turn, perceive their own abilities, potential, limitations, and even their self worth.

Aimee Mullens: have you heard of her? Heard her speak? She is a very able young woman, a sexy athlete, model, actress, whose legs were deformed at birth (fibular hemimelia) and subsequently amputated. She is also very bright and articulate. Speaking at last Fall's TedMed conference, she told many moving stories, reframing the concept of what society regards as "disability" and vividly illustrating the impact of language and perception on learning and achievement.

Watching, listening, I wondered if her points might be at least in part what drive the commitment of those who work to close state residential facilities. Is it a belief or fear that the empowerment, such as Aimee advocates, cannot occur for developmentally challenged individuals in such communities? What about it; can they? And if so, who can they best serve? To watch the video, just click on the title at the top of this post.

3 comments:

  1. Posted for Ari:
    "Saskia,
    I am glad to have just learned of the Developmental Disabilities Exchange. Thank you! I'm very familiar with the term "developmentally disabled," thanks to DSHS labels put on people by case-managers. I also have a four-inch thick three-ring binder on developmental disability as it relates to Washington's prison population.

    Would you please respond with what you believe to be the most accurate definition and some information about how it most often comes about?

    We had a student at the Post-Prison Education Program who was raised on Tacoma's Hilltop when gang activity was at its peak, who basically had no father (in terms of parenting), and who, at age 13, saw her mother shot to death (and tried to resuscitate her mother as she lay bleeding to death). Today, it seems as though her development was arrested at the age of her mother's death, and that she is a 13 year-old in the body of 29 year-old."
    Ari

    ReplyDelete
  2. Ari,
    Thanks for the great question!
    I am breaking it into 2 parts which for the sake of the blog format will appear as 2 different comments:

    Definitions of Developmental Disabilities:
    Here are excerpts from Wikipedia's current definition:
    Developmental disability is a term used in the United States to describe life-long, disabilities attributable to mental and/or physical impairments, manifested prior to age 18.[1] The term is used most commonly in "America" to refer to disabilities affecting daily functioning in three or more of the following areas:
    • capacity for independent living
    • economic self-sufficiency
    • learning
    • mobility
    • receptive and expressive language
    • self-care
    • self-direction"

    "Frequently, people with mental retardation, cerebral palsy, autism spectrum disorder, various genetic and chromosomal disorders such as Down syndrome and Fragile X syndrome, and Fetal Alcohol Spectrum Disorder are described as having developmental disabilities." Causes vary with the specific diagnosis, and, in some cases, even within specific diagnoses.

    Developmental disabilities are usually classified as severe, profound, moderate or mild, as assessed by the individual's need for supports, which may be lifelong."

    "For the most part, the term, developmental disability is a definition on which eligibility of services is based.

    In Washington State, it is defined in state law under RCW71A.10.020(3) as follows:

    "A disability attributable to: mental retardation, cerebral palsy, epilepsy, autism, or another neurological or other condition closely related to mental retardation or that requires treatment similar to that required for individuals with mental retardation. (Traumatic brain injury; conditions caused by anoxia, such as near drowning) Parenthetical remarks by Saskia.

    Which:
    •Originated before the individual attained age eighteen;
    • Continued or can be expected to continue indefinitely, and
    • Results in substantial limitations to an individual's intellectual and/or adaptive functioning."

    This definition is used to qualify or disqualify a person for specific public services which may or may not be available depending on funding and it's source.

    Psychologically, these labels can be limiting, as when some doctors, therapists, or educators hit the limits of their own educations and, rather than reach beyond them, pass their senses of limitation on to parents and patients;
    or the labels can be used cruelly, such as children calling names.

    Conversely, labels can help others to be more accepting of the differences in ability to function and participate in conventional ways that we call the "norm." In these cases such labels serve to enhance patience, respect and support, which is felt by the labeled person as being cared about. In my experience, there is serious empowerment available in the experience of being accepted and supported right where one is.
    End of part 1. See next comment for part 2.
    Saskia

    ReplyDelete
  3. Ari, I agree with your perceptions about the young woman having arrested at her age at the time of her mother's shooting death. What a terrible thing to go through! Although some level of intellectual disability cannot be ruled out, it is doubtful, based on the information you have written. I believe her condition can be better understood in the context of of developmental psychology.

    It is very difficult, often impossible, to resolve trauma without appropriate support. When it is missing, we find a way to go on, but a part of us waits until we find the support we needed in order to heal. A big trauma like the one you describe in an environment bereft of support? Well, that might require us, unconsciously, to hold back a pretty big piece of self while our other parts struggle on. If you still have contact with this woman, find a way to reinforce to her what a valiant soul she is to have made it this far!

    Developmental age identification in psychology can be a useful frame of reference. Counselors who are skilled at identifying behaviors which are typical at certain chronological ages can help the individual identify the traumatic experience and internalize the support s/he originally missed. If, while in a clinically regressed state, s/he can resolve experience(s) at the age(s) when parts of his/her psychological development became arrested, this can liberate the person from feelings and behaviors that get in the way of current happiness and success.

    Relative to the profession of psychology, this is a field which is small; and the work can be intense and demanding for both the person and his or her therapist. In some cases the work can be eased and the course of therapy shortened by combining with other therapies, but not always. Every individual is different, as is every therapist. Finding therapists who are skilled in the field and willing to do the work, affording the work, and sustaining the motivation and stability of the injured person while engaged in the therapy are all substantial challenges.

    Thanks, Ari, for opening this discussion. I hope I have been of some help. Maybe others can add to what I have offered.

    Saskia

    ReplyDelete

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.