Every time I begin this article I am delayed by the latest birth of a politically correct term.
While celebrating this weeks birth of the word “thug” I decided I better get this thing done! The media clearly facilitates this debate on the English language for ratings! The world of disability advocacy however has turned it into an opportunity to change the narrative of helping our most severely cognitively impaired loved ones.
This does not mean I am against the removal of hurtful labels. It just means, I am against them being replaced with other yet to be identified disparaging labels. I am very concerned that by removing these labels we have moved our loved ones outside the scope of the very laws that protect them. Mentally Retarded has become Intellectually Disabled, a term found nowhere in the Developmental Disabilities Act or the ADA. Intellectually Disabled, is actually a term many use to describe their brother-n-law as my wife’s brothers do! I make light of this not because I do not fear the obvious changes, but I do fear the other changes and redefinitions that have occurred under the radar.
Words such as “choice,” “inclusion,” “integration” and “community,” have been conveniently redefined to mean only certain choices or certain places according to the user’s ideology. My own fear builds when the user’s ideology is based in profitability. In these instances, individuals with disabilities have suffered due to a lack of individualized care. The families and caretakers are also suffering from a deterioration of options. Options for living, options for care, options for vocational advancement and options for safety. Service providers across the Country and US Government agencies are interpreting language without considering societies most vulnerable population. Individuals that are afflicted with Fragile X, Severe Autism, Mental Retardation and other developmental disabilities affecting a person so severely that they cannot speak, use a bathroom, feed themselves, understand danger or express pain. People whom when faced with change or pain cannot express themselves in any other way than a violent outburst that endangers themselves or others.
Our main fear should be misrepresentation of the law, by groups and individuals claiming to support and protect the developmentally disabled. Praying on parent’s own fears with long wait lists created by removing options. Nowhere in the ADA, in the Supreme Court’s Olmstead decision, or in the Developmental Disabilities Act is there a mandate to close all “institutions.” These laws encourage community integration where possible, but leave the final decision to individuals and their families.
The Supreme Court in Olmsted goes further, requiring individual choice and emphasizing that “nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”
As a member of the New Jersey Council on Developmental Disabilities, I am thrust into this den of potential wasted! We are supposed to empower of people to become self-advocates, but what we do is educate them to advocate not for their own needs, but for what they are told others need. We let them down by using them to support a narrative, which helps the support organizations get rich!
I fully support for an array of service options, based on individual choice and need. I would love to live in a fantasy world where everyone could live alongside everyone else in a regular neighborhood, enjoying community to the fullest. Living in a regular neighborhood is a nice image, but what’s regular? Some of us live in homes in the suburbs or in the hearts of cities; oth- ers live in condominiums, apartment complexes or college dormitories; and others choose to live in retirement or gated communities. Like all of us, people with intellectual and developmental disabilities will choose and need different living arrangements. They should not be relegated to someone else’s notion of what is “regular.”
As a parent or guardian Never allow others to limit your loved one’s options in an effort to be politically correct!
Geoffrey Dubrowsky. MBA is a member of the New Jersey Council on Developmental Disabilities, Vice President of the Board of Extreme Sports Camp for Autistic Individuals and Executive Board member of VOR.
A professional video producer, with credits including, the Republican National Convention broadcast and Dr. Stanley Greenspan's Floortime series, Geoffrey and his wife are parent of an 18-year-old boy with severe autism. Uncle and guardian of two developmentally disabled young adults on various ends of the disability spectrum. Also, past Pres. of the New Jersey Chapter of Cure Autism Now, past vice president of and NYAC New York families of autistic children ,and past Director of Development for POAC Parents of Autistic Children.