Jessica's Early Years With Autism

In my last article, The Day I Saw My Lord and Savior Jesus Christ, I discussed how Jesus helped my wife and I get through a difficult time with Jessica hospitalized as an infant with meningitis and was on life support for more than a month. With this article will be the first in a series that gives you insight into Jessica’s life from the point she returned to us from her battle with meningitis to her current age of 19 years.

Around the age of six months old, Jeanette noticed that Jessica still wasn’t sitting up on her own and had terrible crying spells that would follow with blank stares. Jeanette took her to see the pediatrician and he referred us to a neurologist for further testing. The neurologist told us after testing that Jessica was having grand mall seizures. According to Mayo Clinic Staff, “A grand mal seizure — also known as a tonic-clonic seizure — features a loss of consciousness and violent muscle contractions. It’s the type of seizure most people picture when they think about seizures in general. For more on this article see: Jessica's Early Years With Autism

The Independent Living Movement: Empowering People With Disabilities

FROM: Australian Disability Review
CREATOR: Irving Kenneth Zola (author)
DATE: 1988
PUBLICATION: Australian Disability Review
SOURCE: Available at selected libraries


In The Beginning There Were Words

1 and there were fifty of them:

2 "No otherwise qualified handicapped individual in the United States as defined in Section 7 shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance. "

3 Within the last decade words similar to these have been embodied in legislation in states, provinces, and countries around the world. They represent a shift of more than symbolic importance. They dramatise a change for all people with disabilities in our relationship to the larger society. They call for an end to our reliance on private goodwill and public charity. They call instead for a recognition of society’s responsibilities and our own civil rights.

4 In its wake has come a movement with different names throughout the world: Disabled People’s Movement; Handicapped Rights; (and for me, I like the name because of what it conveys) The Independent Living Movement.

The Roots of the Independent Living Movement

5 Like all social movements it has its roots in several others and like many movements of the Post-World War II era, it focuses on a group who has felt disenfranchised, shut off, if not excluded from the mainstream of life.

6 From the Civil Rights Movement, the Independent Living Movement learned that rights without opportunity is meaningless; and so it also emphasised certain entitlements to education, income and medical assistance. It emphasised the need for affirmative action and recognised that oppression runs deep in society and thus coined the terms ‘healthism’ and ‘handicappism’ to rank with our other sins of age, sex and race.

7 The Consumer Movement has often been critical of the sovereignty of the professional. As you know, this sovereignty is especially true of the medical world. For instance, the United States Rehabilitation Act of 1973 no longer allows the professional counsellor to have the final work in case planning. Instead it provides for an individual written rehabilitation plan (IWRP) to be drawn up jointly by client and counsellor.

8 The Self Help or Mutual Aid Movement has long advocated that someone who has been ‘there’ is often the best source of support and help. This has been enshrined as one of the key services to Independent Living Centres, its peer counselling programs.

9 Those involved in the processes of ‘self-care’ have long criticized the increasing medical domination of many of life’s problems. The Independent Living Movement both recognizances the important storehouse of information that former patients have, and that much of chronic care can be better handled free of medical supervision. In fact, much of this medical presence, as in the supervision and training of personal care attendants, may be unnecessary, if not counterproductive.

10. And finally, there are the links to the Women’s Movement. Like the Women’s Self Help Movement, those in Independent Living could well have the same mother: ‘Anatomy is not Destiny’. Women are struggling to reclaim their bodies from medicine. They question the growing medicalisation of their everyday lives. They criticise the necessity of labelling many of their conditions not only as medical, but then by definition something ‘diseased’ if not ‘disabling’ and thereby something to be controlled and gotten rid of (Boston Women’s Health Book Collective 1985). The protest of those of us with disabilities is similar. So too are our realities. There is no denying that women menstruate and become menopausal, become pregnant and give birth. Similarly, we with disabilities do not deny that we have physical differences, be it a loss of vision, hearing, or mobility. But this does not mean we are thereby ‘less thans’. The barriers to this realisation as well as to our full participation are rooted in myths, socially induced and socially maintained by some who wittingly or unwittingly have something to gain by keeping us in out places.

For more on this article see: The Independent Living Movement: Empowering People With Disabilities

Fetal Xrays Can Cause Memory Loss and Schizophrenia

Alarming as it sounds, I hardly doubt Fetal Xrays can cause Schizophrenia. Schizophrenia is often misdiagnosed by psychiatrists who look for a reasoning for someone's memory loss. In fact, less than 1% of the population actually has Schizophrenia, so I'm in question about these findings. 

Emotional/Behavioral Disorders and Physical/Health Impairments

From my Factoidz Pages: A special education teacher will undoubtedly have a class filled with children that come to school with varied disabling conditions, temperaments, skills and abilities. Some students will arrive with emotional/behavioral disorders that may or may not have been yet diagnosed. Others may have physical or heath impairments that require specialized equipment. As broad as they are, the teacher needs to be aware of the definitions and characteristics of disabling conditions. Additionally, the teacher must have in his or her tool box strategies for creating and maintaining a classroom where expectations are high, motivation to learn is fostered and every child is embraced and accepted for who he or she is. The teacher should be ready to meet the child where he or she is and guide that student to a new more skilled and independent place. For more see: Emotional/Behavioral Disorders and Physical/Health Impairments

Autism and School Suspensions

Many students struggle with behavioral issues in school that sometimes end up in suspensions. Researchers have found that many of these suspensions are linked to undiagnosed autism.

According to Shaun Heasley “As many as one third of children suspended from British schools for displaying disruptive or aggressive behaviors could actually be exhibiting signs of undiagnosed autism, new research indicates.

In a study of 26 British elementary school students at risk for suspension or who were suspended from school, scientists found that one in three qualified for a diagnosis of autism.

The findings are surprising, researchers say, because none of the students — who attended 16 different schools — were previously suspected of having the developmental disorder. Instead school staff pegged the students as unruly and disruptive.”

With my background as a father with three teenagers that have autism and an advocate in my community, I have noticed that here in the United States suspensions are increasing in alarming rates. Some of the parents have chosen to have their children tested and found that their child has some form of autism. For more information see:
Undiagnosed Autism Could Be To Blame In Many School Suspensions at Disability Scoop

Disability and Stereotypes

Nelson (2003) claims that “journalists are often influenced by the stereotypes they see in popular media images. These stereotypes are then subconsciously reflected when journalists write about disability or do not think to include disability in a relevant story”.

Some people think that people with disability issues need pity and lacking ability. This is sometimes perpetuated by “fund raising telethon” designed to make people feel bad for people with disability issues. Nelson (2003) claim that people often think that people with disabilities need to be cared for and can be a drain on family, friends and the rest of society, therefore they are considered a burden. They are often lumped into a category of the “super-crip”. A super-crip is considered to be a person with a disability that “Through great courage, stamina, and determination, the person either triumphs or heroically succumbs. This leaves people who already have productive lives to feel inadequate”. Many of my friends know that I have three teenagers with autism. Many people who have a genuine interest in knowing about my kids’ disability have asked me if any of my kids where “like that guy in Rain Man”. This goes back to the “super-crip” mentality. Note that this is not my choice of words for people with disability that have overcome a tremendous amount, but a characterization that Nelson (2003) uses to hammer home the problems with stereo-typing. I kindly explained that in reality, people like the guy in Rain Man does not reflect the majority of the population of people with autism and that this is a generalization.

Nothing good comes from stereo-typing. People with disability have been created in the image of God just like the rest of us. We all have strengths, weakness and different personalities which makes us all unique.

Special Olympic Athlete Accepts Award

I have spent the last five years as a parent/coach for Special Olympics Events. I have met some wonderful people. Here in this video a young lady from Eugene, Oregon Amelia Abel accepts an award for Special Olympics Athelete of the Year. I don't claim to know her personally, but her story is inspiring.

Unforgotten: 25 Years After Willowbrook.

I realize that many people would rather watch an up beat video about the lives of people with disability issues. However, we cannot forget about those who suffered through years of isolation and abuse at the hands of institutions. Many of these people were institutionalized and abused because of their disability and they will spend the rest of their lives re-living horrific memories. One man recalls it being a prison sentence after spending 18 years of his life in an institution.

Willowbrook and Other State Institutions

This article is authored and owned entirely by my wife Jeanette Stonecipher.

Why were the Willowbrooks able to exist? I believe that the intentions of the medical professionals were to have a safe, comfortable and productive environment for places like Willowbrook, but instead "professionals" were hired to run these facilities. There lack of training and burn out was a contributing factor that social workers and caregivers experienced. Compounding this problem is that legislation was not in place to protect individuals who were placed in these institutions.

If Kennedy stated they were snake pits in the late 1960's and Geraldo went in with his hidden camera in 1972, why did it take till 1987 to close it down completely? History has shown us that when it comes to making changes within social and health situations our government is slow to react. In my state of Washington, non-profit agencies have advocated to our state legislators for several years to close our mental institutions. Western State Hospital is currently one of the largest mental institutions in the nation. According to Wikipedia (2009), "Western State Hospital is a mental hospital on the former Fort Steilacoom in Lakewood, Washington. The largest psychiatric hospital west of the Mississippi, it is administered by Washington State Department of Social and Health Services (DSHS). It opened in 1871, predating statehood by almost twenty years, and is the second oldest state institution after the University of Washington. [1] For about three months in 1944 and much of 1945-1950 (except for a brief parole in 1946), actress Frances Farmer was committed there by her mother.

According to my co-worker who has an adult child that has disability issues, she used this institution for respite. My co-worker was extremely angry when she knew that Western State Hospital was in the process of closing its doors. I have heard from professionals as well as those who argue that Western State Hospital should remain. There argument is based from advocates that the sprawling grounds provide patients the opportunity to enjoy the plush greenery. If the patients were forced to live in community based housing, they would lose the beautiful Western Washington Grounds. In my opinion, this argument is a backwards way of thinking. This thinking continues to de-humanize the perception of people with intellectual disabilities. All people with disabilities should be afforded the right to choose to live in community based housing. They should have the right to choose where to live, who their friends are and have community access just as anyone else would.

What does this type of treatment of individuals tells me about what we thought of disabilities is that maybe society thought people were subhuman and didn’t have any rights. Parents felt they didn’t have any options and may not have wanted to know what was going on. Parents didn’t question authority because doctors and social workers are they experts.

For more on Disability issues see my friend Carol at Journey through the Cortex: Journey Through My GI System Continued: I get a Barium Swallow
Journey through the Cortex: Journey Through My GI System Continued: I get a Barium Swallow